Since I’ve Been Gone

While freezing my butt off on a cold winter day (today) I decided that it had been long enough since writing about my life. I had been waiting for something to happen since my life is so terribly interesting (cough cough) but then realized that in my absence on WordPress that a lot has happened. Too much to really discuss in one post. So, I suppose I will start from where I left off and see how far I make it.

The medication that the doctor had just started me on the last time I wrote definitely does not help with my fatigue, but it really does help with my pain. My average pain level has gone from a 7 (when I started going to the pain clinic) to about a 5. That is a major improvement and makes it worth taking an extra medication.

My car is still functional, although it doesn’t have my complete trust yet, especially on these really cold days. However, it does get me from point A to point B and I have roadside assistance just in case.

My niece and her daughter moved in with me for a short time (about a month). It was great having family here and getting to babysit my grandniece was so much fun! However, I misplaced my trust and got burned by it. My niece had a key to my house and I didn’t have my medications locked up. The very last thought on my mind was that I wouldn’t be able to trust her. I ended up with at least 6 percocet, 20 strattera, and about 30 tramadol missing. It breaks my heart that she would break my trust, but it hurts even more to think that she has a drug problem. I have literally watched her grow from a baby to a woman and she just isn’t the person that I thought I knew…she isn’t the same person she used to be.

To end on a positive note, I had a wonderful Christmas. I had a real tree and was able to get presents to put under it. Family came over and we celebrated for two days with way too much food. It was the best Christmas that I’ve had in years. I hope you all had a wonderful holiday as well!

Please See Me

Why do you see what you think you see?
When all I want is for you to see me.

Feeling so alone when you’re right next to me
That’s just wrong…don’t you agree?

There are people in this world who really deal with addiction
Why group me with them based on a prescription?

Do I really look like an addict to you?
How can you possibly believe this to be true?

I am very responsible with these meds that I don’t even want to take,
But every single argument is based on judgements you have no right to even make.

To you I am nothing but a lazy bum
To me I am strong to have carried this pain and sickness for so long.

Why is it that you can’t see
How hard it is just to be me?

Anger

Anger is one hell of a monster. It will eat you alive if you let it. Right now, I am allowing the feeling to be…just be. I’m not acting on it, I’m not crying (which is what I usually do when I am as mad as I am right now). I’m sort of proud of myself.

Today I had an appointment with my new psychologist. The appointment was at 1:00 pm.  Since I had to take the rental car back this morning, I made an appointment with my insurance company’s transportation people to take me to see the doctor today (my insurance company provides 10 free round-trip rides to doctors appointments per year). They were supposed to pick me up at 12:00 for the 1:00 appt. At 12:30 I called to find out what was going on and they told me that the driver would be here any minute now.

The driver showed up at 12:47 allowing only 8 minutes to get to my appt. It usually takes 30 minutes for me to drive there myself. To make matters worse, there was another man that she had picked up who also had an appt. at 1:00. Guess who got dropped of first…that’s right…the man.  I mentioned that it was a new patient visit and that I should probably call to let them know that I was going to be late. The driver told me not to worry about it that she would have someone call for me and explain the situation.

I arrived at the doctors office at 1:30. I go in and was told that not only did they not get a call from the transportation company, but that since new patient visits are scheduled an hour and I was 30 minutes late that they would be unable to see me. I was MAD! Very. Very. Mad.  I called the transportation company and asked to speak to a supervisor. I explained to them what had happened and that thanks to them I had been waiting on them and walking around on a broken foot for nothing. That thanks to them the doctor had refused to see me. I also told them that I had no intention of waiting 3 hours for someone to decide to pick me up and to please send someone ASAP.  The supervisor “fixed” things by offering me a free transport after I reach my max for the year. However I have lost faith in their company and hopefully won’t have to use their services again. I have cancelled my appointments for next week to make sure that I have time to get my car back from the shop before having to deal with doctors and therapists again.

Needless to say that today I am REALLY missing my car. I sure hope that I get it back next week. Luckily the gentleman who came to pick me up was quite the character and made me forget about my anger at least for the ride home. His easy banter and conversation made me feel much better. At least for now my anger has subsided and is just a little whisper in my ear. Much better than when I began writing this post while waiting for them to pick me up.

Your Opinion Please

I am writing this post for two reasons: 1) M sort of told me to and 2) I am interested in your input.

I suffer from Adhesions which is internal scar tissue that basically “glues” your internal organs together. Any sort of movement including bending, reaching, sitting, even digesting my food when I eat (because my intestines are glued to various organs and to my abdominal wall) is painful. I also suffer from Fibromyalgia, a disorder of the nervous system which affects many things. It causes widespread muscle pain and weakness, sensitivity to light and sound, brain fog (fibro fog- easily forgetting things you would normally remember or not being able to find the right word when conversing). I also have hypothyroidism, hypoparathyroidism, pre-diabetes, anxiety, depression, and migraines. I take a good bit of medicine for these disorders, but lets skip to the one which is obviously a problem in my relationship…the pain medication.

Although I take muscle relaxers for my muscle aches and pains, and gabapentin for my pain, let’s talk about the opioid medications for a minute, also known as narcotics. When you see a pain specialist, their goal is to put you on the lowest dosage possible that still controls the pain to a normal, functioning level. They want you to still be able to feel pain for the same reason…so that you will know if something is wrong with your body. Right now I am using the Fentanyl patch (25 mg) for around the clock pain relief and Percocet (10 mg) 3 times a day for break-through pain. I take these medications exactly as prescribed except for some days I don’t need all three doses of Percocet so I only take two. In other words SOMETIMES I TAKE LESS THAN WHAT HE PRESCRIBES.

You might be thinking “what is the reason for all this explanation?” The reason is that I now know why M told me that the pain is all in my head yesterday morning. Apparently, he thinks that I am making up the pain in order to get more pain medicine. Like I of all people would make up pain. I take pain very seriously. Now, did I ask the pain management doctor for something else to take for about a week? Yes. But first of all understand that 1) I didn’t ask for pain medication from another doctor. I am running it all through the one doctor that handles my pain management; and 2) He gave me a small dose of Norco (a medicine that is weaker than what I am taking now) twice a day for seven days. Apparently he saw the need for added pain relief. Trust me, if he hadn’t, he would NOT have prescribed the Norco. Just ask any chronic pain patient who has had difficulties getting good pain relief. The doctor understands that this is not part of my normal, everyday pain and that also, to be frank, it is a hell of a place to break a bone. I mean, not only is it broken, but I have to walk on it meaning I put my whole body’s weight on it. OUCH!

So, here comes question and answer time…Do you think that it was ok to have asked for one week’s worth of additional medication or was I wrong and therefore I am a “drug addict” as M says? I especially want to hear from those of you who deal with chronic pain on a daily basis, but, I also want to hear from those who do not…in other words, anyone reading this is game to answer the poll below. Feel free to leave comments as well. All comments are welcome.

 

Happy Birthday to Me :)

Image credit: http://birthdayb.com

Today was my birthday. This year, for once, it wasn’t just another day. I mean, it was because I still went to an eye doctor’s appointment…but it wasn’t because I felt that today was what it’s supposed to be…a celebration of my life.

M has never really celebrated his birthday. He says he doesn’t see the point. I get it. If it wasn’t a big deal growing up or just isn’t a big deal to you, then ok. That doesn’t mean that it’s not a big deal to other people. I respect his wishes and let his birthday be just another day (after the first couple of years when I made him a cake and I could tell it bothered him). However I have made it clear to him that I feel your birthday should be a special day. It should be a celebration of the fact that you’re alive and ANY kind of small gesture can symbolize that.

So, what did I get from him for my birthday today? A single rose? A 99 cent birthday card? Nope. I got NADA except for a “Oh yeah, Happy Birthday” when I woke up. I mean, the fact that I was given life should mean more to him than that, right? I’m not asking for an expensive gift. I truly don’t want an expensive gift. But I would like some gesture that my life is worth something. This has gone on like this for as long as we’ve been together and once again has me questioning if I truly mean anything to him.

My best friend is a woman I met around a year ago right here on WordPress. We have become very close. I can tell her anything and she can tell me anything. We Skype each other just as we are, which is usually lounging in bed in our pajamas because we don’t have the energy to do any different. This woman who I have known for less than a year sent me a gift package today. She made sure that it would be delivered to me on my birthday. It’s not about the gift…which happened to be a card, a beautiful journal, a password book, and a magnet…but about all the thought that went behind her putting it together and sending it.

So the way I see it, I mean more to this woman than I do to a man who has been part of my life for almost seven years. How messed up is that? Now, I know this sounds like I didn’t have a great birthday, but despite M’s lack of caring, this was a totally AWESOME birthday! The gift box sent to me by my best friend meant the world to me. We had our “Birthday Skype” and then she texted me and told me how much I meant to her and how happy she was to have me in her life. That in itself was enough to make it a great day! It almost made me cry to think that I mean that much to one person, and made it even more special because she means that much to me too. She has gotten me through some really tough times this past year when I might have just gone crazy without her.

Therefore, I dedicate this post to my best friend who made this birthday the best I’ve had in years. I am grateful and blessed to have such a wonderful friend in my life. She is more than a friend. She is family.

iPad Replacement Update

After writing this morning’s post, I got a call from the rental store to let me know that my request for a replacement iPad had been approved. If you have been keeping up, on Monday June 21 my house was broken into and my iPad, a cellphone, and a weed eater were stolen. It took the city a week (it is supposed to take 24 hours) to get me a copy of the police report because they “misplaced” it, and then it took the rental store a couple of days after getting a copy of the police report to decide whether they would replace the stolen one. I got tired of waiting and just bought a new tablet for myself, but M (and my sister, but M was first) offered to take over the payments if they replaced the old one.

So, the store calls to let me know that they will be able to replace the iPad with one that they have in the store. I asked if it was the same as the one that was stolen (in model and memory – I had a 64 GB iPad 3) and they didn’t know. I mean, how do you not know what you’re selling? They tried to give me the serial number so that I could call Apple to confirm the memory on the replacement, but the store manager gave me one of the serial number’s letters wrong and it couldn’t be looked up. Therefore, I had to drive there and get the serial number myself. I contacted Apple and it turned out that the iPad Air (iPad 5) that they wanted to give me was only 16 GB! That’s a quarter of the memory that my old one had. Well, that wasn’t going to cut it, so he called around to other stores and found me a 64 GB iPad 3 at another store. I heard when he specifically asked the other store if it had been refurbished (sent to the technician) because it had previously been rented out. They assured him it had.

I drove across town to pick up the iPad, but when I got home and turned it on, the first thing it asked me for was a passcode. Great…just great. So I called the manager back to ask if he could call the other store to see if for some reason they had placed the password on it. Nope. Turns out it was never sent to the shop to be wiped clean (refurbished). I mean really…what kind of idiot says it’s been sent to the shop when it hasn’t? The manager told me that my only option now is to let them send it to the shop to be reset which will take about a week. In the meantime, they will let me “borrow” the one they had in the store that only had 16 GB. AAAAARRRRRGGGGGGGHHHHH!!!! That was a scream of frustration by the way. I feel like going to a really quiet place (like a library) and just screaming as loud as I can. Do any of you know if that actually makes you feel any better or is it just a saying? Now I have to create a new Apple ID to use on the rental tablet because I don’t want any of my personal information (or M’s) left on it when I give it back.

The only good thing about all this is that they are going to come by the house to exchange the tablets so that I don’t have to go back out today…and in the rain no less. Also, this way I know for sure that when I get it back, it will have been purged and examined for any problems, so I shouldn’t have to worry about it not working properly. With people this bright, I suppose “shouldn’t” is an assumption. It seems nothing seems to go right. I am so glad that in a few more payments this thing will be paid off and I won’t have to deal with them any more. Let’s just hope that it is in good working order when I get it back so that when it is paid off I won’t have any further issues with it. Here’s to hoping!

Turning Lemons Into Lemonade

Image credit: http://familyshare.com

Monday evening my good mood was stolen from me by the person who broke into my house…it was taken along with my iPad, a cellphone, and a weed eater. I called the police and reported the items stolen and while I waited for the police to show up I called Apple Care. They were able to provide me with the iPad’s serial number (which was also on the box had I thought to have checked) and with the Apple locating software. Unfortunately, since it was a wi-fi enabled device only, it would not show me where the iPad had disappeared to until it was connected to wi-fi…in other words, it is long gone.

I made sure that the device was locked and that once turned on my phone number will show up along with a message to call me. Hopefully that will be enough for it to be un-pawnable (I don’t think that is a word…it will make it impossible to be pawned). I also made sure that the police got all of the information that he needed for his report. For the rest of the evening I was emotionally numb.

Tuesday I stayed home all day making phone calls to see if the iPad was going to be covered under the insurance I pay for every month to the store I’m buying it from (yes…I said buying…in many expensive payments I might add). I was told that they wouldn’t know until they had the police report and then they would call the insurance company to find out if it can be replaced. Hello!?! IF it can be replaced!?! The cellphone that was stolen (which M was going to inherit from me) ended up not being covered under the insurance because the line was not active at the time of theft. Problem was, he still needed a phone upgrade. I was remained somewhat numb that day, but also scared that the robber would come back for the TV and other things he didn’t take. So scared in fact that I refused to even take a shower until M got off work.

Tuesday evening my brain finally began to function and I started weighing my options. I could file it on the store’s insurance and continue to pay exorbitantly high payments for a refurbished iPad 3 that might or might not be replaced within a week (anyone who knows me knows that I LIVE on that thing…I hardly ever use a laptop anymore…so a week just wasn’t going to cut it for me. Or, I could go back to Verizon Wireless and purchase a brand new iPad Air (a.k.a. iPad 5), also in payments but without the crazy interest charges, and it would have wifi and cellular data service. As a matter of fact, the new one would cost me less than what I had left to pay on the old one…it was a no-brainier!

Wednesday after my therapy session I took a trip up to Verizon to make sure I qualified for the payment plan. I did! Like I mentioned before I also needed a new phone for M. They had the 5s on sale from $199 to $99, the 5c on sale from $99 to $49 and the 4s was free. He had asked for the free one. Well, when I said that I was interested in the 4s, the manager came over. She wanted to know why I had opted for the 4s (which still runs on the 3G network) when the newer 4G network phones were on sale. I told her it was simply because he had asked for the free phone. She asked if I would be interested in the 5c if she could get it for me for free…uh YES! So the manager worked her magic and I was able to get the iPhone 5c for M for free!

Needless to say, I totally took my bad experience of a burglary and turned it around. I made lemonade from the lemons I was given. As a matter of fact, I am actually going to be breaking even money-wise. Before, I was paying close to $140 per month for the iPad payment and another $60 per month for my prepaid phone bill. That comes out to $200. My new bill for three lines of service, insurance on each device, and the iPad payment will be about $220. I mean really…you can not beat that! I may have lost my new happy self for a couple of days, but boy am I back!

Bye Happy Joy

So, happy Joy didn’t last very long…as usual. I’m so frustrated. So tired of having no support system. Tired of being made to feel like I’m worthless and some kind of druggie because I am sick and have to take medication. I woke up this morning to a barrage of insults about how nothing is ever done around the house…about how I just stay in my room (hell yeah! It’s the only room with AC) and take medications and smoke cigarettes. How can he say anything when he smokes and takes medications? How is it possible that he doesn’t understand that I didn’t choose to be sick? I didn’t choose to have to take medications, and I didn’t choose this life. All of this was chosen for me by a higher power.

So, as of now I have adhesions, fibromyalgia, prediabetes, hypoparathyroidism, and now hypothyroidism. It seems my body is attacking itself. The first to go was my thyroid. What will be next? Hopefully the rheumatologist will be able to figure out what kind of autoimmune thing is going on when I see him next week. But all in all it really doesn’t matter. I will still be seen as a lazy, good for nothing druggie. Sometimes I wonder how different my life and illness would be if I had a support system and less drama. I think it’s time for another trip to my sister’s. I really don’t want to be around any of this right now. I shouldn’t have to put up with someone trying to judge me and insulting me.

The Cherry on Top

I had an appointment with my endocrinologist the other day. I see him for prediabetes and hypoparathyroidism (extremely low Vitamin D deficiency). We make time for each other every 6 months where he checks my bloodwork (that I get done 1 week before my appointment), tells me everything’s looking good, and then I go home. Well, that’s the way it has been the past year…

Monday, however, was unfortunately not my usual easy appointment. He takes a look at the test results, and circles something before continuing down the list. At that point I was thinking to myself that maybe my Vitamin D levels were off again or maybe it was my A1C and I should be checking my blood sugar more often.

Well, imagine my surprise when he asks me if I’ve been taking my thyroid medicine! I was like, WAIT…you never prescribed me any thyroid medicine because you said that my thyroid has always checked out. Turns out that what he had circled was the results of the thyroid test. He checked back at the past labs before saying, “yes- you’re right. Before the levels were always normal. Today, however, it seems that your thyroid is not functioning anymore.”

WHAT? That was the last thing I expected to hear. So he checked my neck (where the thyroid glands are) and said that they were swollen. I had actually noticed that the area had been sore for a while, but I assumed it was because I smoke, or maybe because I was getting sick…not realizing that I never came down with anything.

The thyroid gland controls the way your body uses energy, like your metabolism. The symptoms of hypothyroidism (not producing enough thyroid hormones) are a lot like those for fibromyalgia. Low energy levels, tiredness, weakness, trouble dealing with cold temperatures, and memory problems (or trouble thinking clearly). So I assumed those were all because of the Fibro. Also, it can cause dry hair, dry skin, constipation, and hair loss. I assumed the dry hair and skin was just a byproduct of the extreme colds this winter and I deal with constipation because of the adhesions and pain medications. The hair loss I didn’t really think much about because I have really thick hair and always shed. So see, there was no symptom that was really out of the ordinary for me. Add to all this the fact that when something is wrong I can usually tell, but then it is a matter of getting a doctor to agree with me. It’s sad that things are that way, but it’s true. I forget sometimes that I have composed a great team of doctors (the jury is still out on my GP, though lol) and don’t really have to worry about that anymore.

Suffice it to say that I was STUNNED that something is wrong with me and I didn’t realize it. It also bothers me that the inflammation has caused permanent damage to my thyroid and I will now have to take thyroid replacement medication for the rest of my life. I mean, it’s not like I didn’t already have a laundry list full of different diagnosis…now I have one more that will follow me around. One more invisible illness to have to manage.

So yeah, when the doctor told me all of this, I said “well isn’t that just the cherry on top?” One more thing to have to deal with. I am, however, looking forward to the fact that once the thyroid levels are regulated I may get a little bit of energy back. I really miss having energy! What I am not looking forward to are the doctors appointments every two months until we find the right dose of medication or the new pill I will have to take every day. At this point, all I can do is look forward to the sweetness of that cherry instead of the hard pit in the middle.

Medications and Anger

A couple of weeks back when I went tot the doctor for my coughing, he prescribed me this new asthma medicine to take twice a day so that I use my rescue inhaler less. As far as the coughing goes, the new stuff helped the coughs be more productive and I have gotten a bit better. There are a few problems with this medication, though. One, it makes my mouth burn. Rinsing my mouth out after using it has helped some but my tongue still stays pretty sore. Two, I have been having some major anger issues lately that may be caused by the steroids in this medicine.

I am normally an unusually patient person, but lately, the smallest things just set me off. I hate feeling this way. I hate being angry. It usually doesn’t last long, but while it does, the feelings are intense.  Lastly, my appetite (which was nonexistent when I went to the doctor) has returned with a vengeance. I stay hungry all the time now.

Have any of you dealt with these issues? The medicine is called Symbicort. If so, were the side effects worth it to you? The doctor offered to switch me to another medicine called advair (I think), but wouldn’t it do the same things if the medicine works in the same way? Any advice you guys can give would be appreciated!