Medication Lists

     I decided that, for fun, I would make a list of the meds I am on, with links to information about them. Maybe this will help people see why I am always sick, tired and cranky. Maybe it will also help others see what I really deal with every day of my life. This IS my new reality

     The current medications are: 

• Calcium Carbonate  - (for bone health...to replace what the drugs take out of my bones every day)
• Lidocaine (Lidoderm) 5% Patch  - (Nerve pain, chronic back pain, joint pain, pain NOS)
• Azathioprine (Imuran) 50mg - (Microscopic Polyangiitis MPA)
• Hydrocodone-Acetaminophen (NORCO) 5-325mg - (Chronic and debilitating back pain)
• Promethazine (Phenergan) 25mg - (Nausea from the medications)
• Omeprazole (Prilosec) 20mg - (Acid Reflux Severe, from the medications)
• Folic Acid 1mg - (Reduces Side effects of the medication)
• Sulfamethoxazole-Trimethoprim DS (Bactrim DS, Septra DS) 800-160mg  - (Infection Control due to medications causing immunosuppressive issues)
• Hydrochlorothiazide 25mg   - (High BP and Extreme fluid retention in lungs, legs, hands, face and feet)
• Advair HFA 230-21 mcg/puff Inhaler - (Asthma, lung issues from the MPA)
• DuoNeb 2.5-0.5 mg/3 ml Inhalation Solution - (Asthma, lung issues from the MPA)
• Clonazepam (Klonapin) 0.5mg - (PTSD, Anxiety, Panic Attacks)
• Lexapro 20mg - (OCD, Depression)
• Prednisone 5mg - (Microscopic Polyangiitis)
• Magic Mouthwash (Diphenhydramine-Lidocaine-Aluminum and Magnesium Hydroxide-Simethicone) suspension - (Mouth Sores and mouth sensitivity)
• Fioricet 50-325-40mg - (Headaches)
• Prazosin 1 & 2mg - (PTSD Nightmares, High BP)
• B Complex Vitamins - (Mental Health)
• D Vitamins - (Bone Health)

Now you see what I go through every day of my life. So if I feel sick, or can't do something, ask yourself...if you were on all these drugs daily, how would you feel? This does not mean not to ask me to go out...I would love to be asked, and if I can I will go, but if I can't understand please. 

Luv u all -T.

UPDATE: Imuran, Day 1.5

   

   
    I have had a lot of changes since the last blog post. I am sorry it has been such a long time coming on the updates, you can all line up to spank me at a later date. Here is a rundown of the goings on in the loony life of mine.

     I got into school officially again at Minnesota State University - Moorhead. School is one thing I lost from being ill, and one thing I strive to finish. I still am in the process of the financial aid appeal process (I lost my financial aid because of low and failing grades), so good thoughts and wishes that comes through okay. I start May 22nd, taking an online class about contemporary moral issues. ANYONE who knows me knows I will love a class like this, arguing about moral points and issues. I am pretty outspoken, and I look forward to annoying people with my loudmouth viewpoints, and possibly being proven wrong and someone actually changing my thinking. (Hey I am open minded enough to change based on new evidence...nothing is black and white) My next class will be in July-August, Personality. That is for my Psychology major, and will be an interesting look into the personality of the human being. Honestly, I just can't wait until I get to the good stuff, abnormal psych. I am good at that stuff. (I can't decide whether to be proud or ashamed of that!)

     I have had a recent bout with a few frightening occurrences  I will tackle them one by one, and let you know what was said, and how it is now. As many of you know, I have Microscopic Polyangiitis (MPA), which is a rare, auto-immune, ANCA positive, systemic vasculitis, that can lead to fatal organ damage if not treated. Because of this I was taking Methotrexate, and Prednisone. Because of the side effects of these medications, I also had to be on Sulfa/TMP DS (to stop infections), and Folic Acid (to prevent hair loss, mouth sores, and more). This in addition to the drugs for my lungs, and my medications for anxiety and depression. 

     Being on these medications can take quite the toll on a person's body, and one day I woke up shooting out of bed, because my throat was burning. It felt like someone had poured gasoline and lit it on fire in my throat. I could not breathe, my eyes were watering and I was sick to my stomach. I ran to the bathroom because I felt like I was going to pee myself, and as I sat there I vomited pinkish bubbly vomit. It really had no consistency  it was completely pink and bubbly, like bubble bath or the bubbles in beer or soda. Instantly the burning ceased in my throat, and I could breathe again. I was too scared to go to the ER, because I have been treated so terrible by doctors before I was diagnosed. I was labeled a liar, hypochondriac, frequent flyer, drug seeker, doctor shopper, etc. So I waited and called the doctor later when they opened. 

     My doctor, never one to not be careful immediately got me checked over, and I was put on Omeprazole (for acid reflux...they wanted me on Protonix but the insurance is being douchey and won't cover it until I try this stuff), and, because of nausea making me unable to eat properly when I take the meds (which causes havoc on the tummy), they put me on Promethazine to control the nausea from the meds. I must say one week on those and I was feeling great again, although I was chewed out for not going in, as both the MPA and the MTX can cause fatal gastrointestinal problems. Point taken, next time I vomit something up I will go in.

     Fast forward to 3 weeks later, and I am feeling groovy. I even got out to go bowling with some friends, and hang out with my nieces. Then, as soon as the wonderful freedom starts...I start developing disabling pain. FIrst in my wrists, to where holding things was hard for me. Then my knee. Then came the neck pain, and back pain. That pain was so severe that I was sobbing uncontrollably. I suffered like this for a week because of fear of looking like a drug seeker (because I know for a fact NSAIDS are a no go with my illness and meds, and Darvocet and Tramadol don't work for me), so a week into the pain I became desperate. I took NSAIDS and regretted it. I puffed up, my lungs got wheezy, and the peeing all but went to a standstill. In desperation I called my doctor again. She got me in the next day for an emergency appointment, and we decided on a few things. But first the pain. They ordered a DEXA Scan, to measure my bone density, and ordered some labs. They believe the Prednisone is causing bone loss, and possible Osteoporosis, or Osteopenia. 

     They seen my body is ready to cave in on itself, I am walking like a penguin, and I am hurting badly. Taper the Pred down to 15mg (I have been on it high doses for over a year, so it is amazing to be at 15mg now). She also prescribed me Vicodin for the pain, and Lidoderm Patches to numb the pain nearer the skin. These things are making it tolerable. Of course, now my arches have dropped on my right foot, making me unable to walk properly, so an orthopedic or podiatrist is in order soon. If it is not one thing it is another!     Now, at the same appointment, they determined I was again flaring up, and discussed Rituxan Infusions. They actually wanted me to start those, but I am terrified of shots, and I hate hospitals, and I am terrified of an infusion reaction. Methotrexate was working well, but it did not last the whole week, it would wear off too fast in me, so as a compromise, they decided on Imuran instead. It is taken daily instead of weekly, and they said maybe, it will work better. If I do not show improvement I promised I'd do the Rituxan Infusions.       

     So, there is my update. I took my first doses of Imuran today, and, two doses in now, I am feeling okay. I became very tired and had to nap, but after the nap I was fine. I notice some of the water is going down too. (I went up to 481 lbs, 40 due to water weight alone, the rest from being sick, unable to do anything, and being on prednisone off and on for almost five years, and one year consecutively twice). I am seeing a medical weight loss team to help me get back to my old pre illness weight. So before you judge fat people realise maybe they have an illness, and it is meds, not being a food stuffer, that causes it. 

     Anyway, there is the update. I will post a full list of all my medications and tests I have had (and diagnosis I have had over the years) soon. Just so people can see how long this has gone on.  So again I am sorry for the delay, today is day 1.5 for Imuran, and I honestly feel okay. I hope I can get past this little turd in the road, and come up okay from all of this. I appreciate your support! 

<3 Tamz

Satan's Tic Tacs!

Well, due to the increase in Statan's Tic Tacs, the Prednisone...I have not slept yet. I got up around 3pm yesterday and have not slept since. Oh Prednisone how I want to punch thee in the bottle-cap. It is now 1pm the next day almost. Will I go to bed soon? Maybe. And I already took my sleeping pills, AND my anxiety meds...to no avail. Prednisone...the always keep you upper!

Just a Stupid Blurb...

I can't say that I really am sad when the Methotrexate makes hair come out, when it makes a chunk of gray hair fall out and that is it. In fact...thanks for getting rid of that pesky gray patch lol. Salon professional results brought to you by Mylan Pharmacuticals lol

Naughty Body, Good Mind

     Today I am sitting here irritated. I have had this problem with my teeth and gums since I was a small child. I always had cavities even though I always brushed my teeth. Eventually they would start to break, and no one knew why. Fast forward to today, and I have two severely broken teeth that need to come out, and two minor broken teeth that need fixed, but guess what? No one will touch me until I get clearance from my doctor. The doctor said it is okay as long as I am off of my Methotrexate for a week before, the week of, and the week after (if I am not healing well), so there is three weeks of no medication for the MPA. That frightens me because one week off of the meds due to illness and I am getting severely ill. My body is bad. Naughty and bad and it needs a good spanking, which I am going to do to it...in the form of a new diet. That'll teach me to mess with me like this! I am curious however, did the MPA cause my teeth problems? Something else? I know I have had mouth sores and stuff for years, but why are my teeth falling out of my face when my sister, who grew up eating the same things, brushing the same way, never have one cavity  Something I'd like to know so I know who to bitch slap for my teeth. As it stands now, I think the tooth fairy put a hit out on me, and it is kind of pissing me off. I'd kind of like to keep what I have left!

     On another note, I am having a good brain day. Normally I find myself getting depressed a lot lately, because of the inability to do much of anything, but today I staved it off. I spent the day armchair advocating, creating a rare disease blog, and researching. I also created a group for campus called MSUM Rare Aware. I am going to see if I can make it an official group and see if the medical studies and Hendrix Health Center might help with it. Awareness. I know in some way I am going to have an awareness day at school...more of that to come...

I know you want me... Cough Cough

     Well, I am soon off to bed, after downing my nighttime cocktail of Prazosin, Folic Acid, Lexapro, and a Klonapin. With all of that, I should be having happy dreams of unicorns running from Jack Nicholson zombies, dancing in a field of tulips and week old daisy dukes. Oh and I am randomly wearing a face mask. Because I can, and for some reason I enjoy the smell. Now I know I am insane. 

Video Blog: METH DAY 2-27-2013

Video Blog: Tamara's MPA Video Update

Video Blog: Tamara on Microscopic Polyangiitis (MPA)

Real Talk About Microscopic Polyangiitis (MPA)

Me in the Hospital

     So, in interest of being real, I feel like some people might think I am attention seeking or feeling sorry for myself. While yes, I am feeling a bit angry and disturbed at having this damn illness that robbed me of so much, I know I can beat it to an extent…it is accepting the limitations I have. I compare myself to before I was sick, a beautiful, active, vibrant young woman who could walk for miles on end, hours, across two towns in one night. I compare myself to the girl who would wake up refreshed and be able to conquer the world if I had to. The girl who was a 4.0 special honors student at college. The girl who went out with friends all the time. The girl who had a job I loved, and was great at. Then it all started to slip away…a little here, a little there. Eventually I couldn't even walk across the house a few feet to go from my bedroom to my bathroom, let alone across campus to go to school, so I stayed home. I failed 4 semesters of college because of being too sick to even sit up for long at a computer. I started to isolate. 
     Eventually I got so ill, I could never breathe…coughing until I coughed up blood…nosebleeds, skin sores, pain. My father was in the hospital and I couldn’t visit him because I thought I had an infection in my lungs…he died and I never could tell him I loved him or say goodbye because they wouldn't let me in the ICU sick and coughing up blood. Eventually just to walk I needed a cane, and at stores, a cart to ride on. I gained weight. Lots of it. I was giving up and wishing I would die. Something told me I was dying and I did not care any more,in fact I wished for it, and often thought about taking my own life. Then came a switch to a hospital, Sanford in Fargo. I got an internal medicine doctor, doctor Aruna Aravapalli. She listened to me from start to finish and suspected a few things, so she took some tests. When they came back messed up she sent me promptly to Rheumatology  After seeing all of this they said I was sick. If they did not find out what was wrong with me, I'd need to go to Mayo clinic. The problem, they said, was that I did not fit into one disease symptomatically. I fit many. 
     So, 63 tests, CT scans and other testing later, a diagnosis of Microscopic Polyangiitis was made. Positive P-ANCA level with positive MPO’s…high inflammation levels, kidney issues, chronic sinus changes, lung problems, skin, everything…though they are still trying to see if I have an overlap in autoimmune diseases, they started immediate treatment. I was told I did not have long left to live if I did not start treatment ASAP, and the only reason I did not die yet was due to the high doses of prednisone that I had been on off and on for years on end for my lungs…it kept me alive, but did not put this disease into remission so I can have quality of life. I laughed and smiled when they told me. This is kind of odd I know, being told you have a life threatening rare disease, but I had been accused of being a drug seeker, hypochondriac, attention seeker, and mentally unstable. I had been told everything was in my head, and that they could not find anything wrong with me…I was dismissed by everyone I dealt with. I was even told by a doctor that I obviously did not need his services and he refused to see me any more because I missed an appointment because I was bleeding out of my lungs coughing up blood a lot, and was too sick to go to the appointment. 
I was treated callously, only to find out that my feelings were right, and that I had been targeted because THEY couldn't figure it out, so it must have been me being a liar, druggie, crazy etc. Now I knew I was not wrong, that they were. 
     Anyway, I compare myself to my old self, not seeing that I can now drive (although I need a handicapped permit), and I can walk without a cane. I can use a regular cart in a store, and not a riding cart although I have to rest a lot. I am also alive when I should be dead. I was near it when I was diagnosed. I need to accept my new reality, my limitations. I need to adjust my goals and my life in order to fit this new reality, and still have a quality life. I am thankful for being alive…but yes, I feel angry. I grieve myself. I sit afraid sometimes when I am sick again that I could die. I grieve the life I had before…and sometimes I get so angry I can hardly breathe. 
     Why me? Not hardly. I ask why ANYONE should suffer these diseases. I hate this disease…and I think it is unfair that life can be changed so much in a heartbeat…for me, for anyone with a multitude of diseases. So bear with me as I adjust to my new reality. Don't ignore me. Think of me when you make plans. I am isolated enough because of this illness. Even if I can’t make it because I am sick at the time, being asked means the world to me. Don't be afraid of me. I am not contagious. You don't need to treat me different. I am still Tamara. I am still me, and I can still love, laugh, and play. 
     I had a dream once where I was invisible. I was reaching out to all these people and no one could see or hear me. I woke up sobbing. It is happening now. Please do not shut me out…out of sight out of mind. I am here. I am alive, and I am still Tamara. Even if I am a slightly different version of Tamara, I am still inside here somewhere, and I WILL beat this disease. 

A Day in the Life of “Your Lord and Master”, King T…

Well I have done it again! I have proven that humans love to be tortured, and because of this I will continue to do it nightly. See, my human servants decided to go to sleep. I of course had other ideas in my mind. Here is what happened when the lights went out and the oh so trusting humans closed their eyes.

1. I climbed up onto the dresser and started to knock things off of it, not once but TWICE! (that they noticed anyway) The humans got up and decided to yell at me so I went and hid. Not cause I was scared, but as long as they were up, I couldn't do the other things I had planned.

2. I knocked over the trash in the bedroom. There was Q-Tips in there, and I love the taste of earwax in the morning!

3. I dug in the trash in the living room. It serves my humans right for throwing away such tempting objects as wrappers and cans, and snot rags…I LOVE THOSE! I shred them and leave snot shreds all over the floor!

4. I took a roll of toilet paper and drug it to the living room. I shredded it up real good, so they can’t use it any more, and they have a mess to clean! BONUS! Who doesn't like fluffy softness all over the rug?

5. I opened the cupboards and dug in them, even dragging some things out of there. You know how much they enjoy that one? Whooheeee!

6. I jumped up and knocked the books, phone, and remote off of the bedside table. Everyone knows humans shouldn't be allowed to have such things…it distracts them from what is truly important…ME

7. I dug in the closets looking for Styrofoam packing peanuts. The humans threw them out and now I am pissed. They will get theirs!

8. I decided since that was not nearly enough I would eat some of my mom’s hairbrush hairs, so when I pooped, it would hang from my butt until it dropped off hair and all onto the floor! THEY LOVE IT!

And through all that they still love me and think I am cute. I still get loves and kisses, and even treats. Why? Because I am cute as hell…and I have the power! Tis the life of a cat!

POSTED BY TIGGER WITHOUT PERMISSION FROM TAMARA. I OWN THEM I DO WHAT I WANT =^_^= meow