Here's to HOPE- Playing in the backyard again...

Apparently, per my new pain mgmt dr, young women who have RAD (Rheumatoid Autoimmune disease or Rheumatoid Arthritis), having Fibromyalgia (FM) is very common. I was finally officially diagnosed with FM on Feb. 14, 2012 by a pain mgmt dr. I thought I had FM a good while back but didn't have an official diagnosis. The problem was that my Rituxan (current RAD med) was working on the RAD pain but I was still in pain and wasn't sure why. Well, now I know it was due toFM.

FM has many aspects to it. 1) It attacks muscles and tendons and with this full out assault comes PAIN. Constant, unrelenting pain.  2) The central nervous system cannot decipher between a "little pain" and a lot of pain. I always said pain is subjective- and as usual, I am right (hahaha).  Think of your central nervous system as a firehose with a nozzle. The nozzle controls the flow if water (in this case, the flow of pain). Without the nozzle- the water runs at full speed, nothing channeling it, the water runneth over... ;) This is what FM does. FM Patients do not have a nozzle. The central nervous system doesn't work right. And its proven to be a chemical imbalance. This brings me to #3) Depression comes with FM. They don't know if the FM causes the depression or the other way around.. but they go hand in hand. And if you think about it, it makes sense due to the chemical imbalance. 4) Fatigue-FM has a very nasty fatigue aspect to it, just like RAD. I'm sure there are a lot more, but I'm just learning.

The pain mgmt Dr was very nice. I will call him Dr. FM. When he asked why I was there, I almost burst out in tears. I have been in so much constant pain that I didn't know where to start. I got through the explanation without shedding a tear but I sure felt the "twinge" a couple of times.  It was a good visit and I am hopeful that we get the FM controlled. I started on Savella on Feb. 14 (the evening of my appt) and he prescribed a pain medication (which the pharmacy had to order). Savella has an energy booster, anti depressant among other things.

After my pain mgmt appt, I went and picked up my daughter from school and we went to eat at a small, local, cozy diner that we LOVE. I told her about my appoinment. I don't like to keep things from my kids. I may not tell them the "not so nice details" of the disease or the meds, but I do tell them at a kid level.

I digress...
After I told my daughter that I went to a Pain Dr- She didn't even let me finish telling her about my appointment. She replied "That means you can play with us in the backyard and won't be too tired or hurting!?"  I tear up just thinking about that response and what that means. First, it means that my kids and my husband have suffered from these diseases. They have suffered differently, but they have suffered. It also means that my daughter understands exactly what these diseases are and do. I didn't have to explain why I hurt or why I'm tired all the time. She knew because I explained it to her before. She knew exactly what this new medicine may mean. HOPE. It meant that maybe, just maybe with the other meds, I can play with them in the backyard again...

~t

What is my purpse?

I don't know what to call this entry. Nor do I really know what I want to say... I know that I've had a VERY rough past couple of weeks. My medication has worn off (Rituxan) but my rheumatologist will not allow me another infusion until April 2012 (6months from the last one), because the medication is too dangerous. The constant fatigue along with the pain in numerous spots, is really doing a number on me. I am barely able to keep my eyes open past noon,, and I get up at 8am. My legs and feet decide not to work occasionally and I cry from the pain.

Even through the pain that I experience, I am starting to realize my purpose behind it all. I believe I am meant to spread awareness and educate for those that suffer from Rheumatoid Autoimmune Disease in silence. We are not meant to be in constant pain or fatigued. We are meant to enjoy life while we are here. Be able to bend over and smell the roses and put on socks without aides. I will no longer live in silence like I did for so many years as a young athletic adult who chaulked up my pain to over exercise or not being in shape. This was not the case at all, and now I have permanant damage because I "sucked it up", the pain that is.

Out of "spoons"

I'm so tired today. I would have to say that i used all today's "spoons" (energy) yesterday. I worked till 530pm, ate dinner at home, went to the coffee shop to get a Large extra shot mocha so I could stay awake for when John got home and we could spend some time together. While waiting on him to get home from work (9:45pm) I went shopping. Found some good deals but by the end of my two hours of shopping, i was practically laying ontop of the cart, almost asking people to push me around.

And so today.... I'm exhausted. I'm having such a hard time to keep my eyes open here at work. I have a things to do list so I can stay focused, but it doesn't seem to be helping...

Trouble Maker.. who me?

Have you ever eaten a bite of food, or heck even a whole meal and you found yourself snorting the food down? lol.... i swear i just let out the biggest snort while eating my chicken salad sandwhich. Why do steroids make me SOOOO hungry?  I'm sure i'll be going for all you can eat pancakes tomorrow morning at Steak and shake. hahahahahaha...

so...im sitting here (at the Cleveland Clinic Cancer Cente)r with my sister (THANK GOD) taking round 2 of my Rituxan infusion. I'm two hours in and I'm a little sweaty and hot. Blood pressure is going up slowly but not out of control. I have about two hours to go. We've already watched the first of the Jason Bourne series, and I'm about the put the next one in.

this morning when we got here, I recognized my nurse from last time. I told her about the blood clot and my tongue temporarily swelling. she wasn't that concerned with the blood clot since it was a superficial vein. But her eyes about popped out of her head when I said my tongue swelled. I said "It only lasted about 5 mins, it went away". she goes "Tonya, you have to tell me those things. I don't want to have to "code" you." I chuckled and said "I don't want to be a burden, and it went away. But i wouldn't want you to have to code me either. I'll tell you next time." So she just went on lunch break and I overheard her basically "warning" the other nurse about me bc I don't like to complain! lol... ohhhh my... and here i thought i was being nice. lol

too funny... my zyrtec is making me tired... and Im hot and sweaty... ugh.

Speedbumps

Speedbumps are annoying... I hate driving down through a parking lot or down an alley way and all the sudden, for no reason, there is a bump that wants me to basically stop my forward progress...

I had a GREAT last 3 days or so. It seemed as if my body finally adjusted to my Rituxan and was getting energy back. I was finally able to run errands on Saturday morning and THEN come home and actually clean the house. Do you know how long it has been since I had enough energy to do that??? I also made a roast in the crock pot and john built a fire. We had some friends over and it was just...ahhhhh... nice. I could literally just sit by the fire, laughing with our friends and listening to Mason jump on the neighbors trampoline all night. It was soothing... almost meditative.

Then the speedbump jumped up right in front of me. Around 11pm my left wrist started aching, my fingers swelled to resemble John's favorite Italian sausage and all of the sudden, EXTREME PAIN. To the point of tears. It was so sudden. I tried ice, I took my night time meds and an aleve. No relief. I became concerned bc my left arm is the one with the blood clot from the last Rituxan infusion. So, at 1am, I had john's friend Brian take me to the hospital (Mason was sleeping and we didn't want to leave him or wake him). He dropped me off and I went in. I was there for 3 hours. When the ER dr came in, he saw that I had RA, barely looked at my wrist (which was twice the size of normal by now) and said "it's a flare". I told him about my clot and he was not concerned- or atleast didn't seem to be. He gave me a prescription for percocet, a brace and sent me home. I seriously hate telling dr's that I even have RA... its the easiest condition to blame EVERYTHING on. UGHHHHH...

Today, the speedbump was still there. I wore the brace for most of the day. I was/am such an emotional mess today. I've been angry, sad, irritated and unfortunately I've put some of it on John. It's not his fault that I hit a speed bump today... It's not anyone's fault. This is EXACTLY why i'm afraid of getting too excited/happy about any medicine or good reactions that I do have. It's like I get to a certain place (MPH) and then all the sudden, I have to stop on a dime for a speedbump. I'm really hoping this is "just" a speedbump and not continuing on the "pot hole road".

wow,, didn't think i had that much to say... guess i was wrong.

good night.
 t

Preparing for round 2

I've been trying to drink more water and less coffee so my veins will be ready for my infusion on Tuesday. But I really don't know if its working. My veins are so small as it is... and RA actually shrinks them more. I'm also trying to prepare for my upcoming trip to Nashville (week of Oct.17-21) and then Dallas (Oct. 26-28). I think I should be good for those trips however, I have been really tired lately. So i'm not sure how my body will react with round 2 of Rituxan next tuesday.

A dear friend of mine (she has RA too) has been having numbness and tingling in her legs. I've had these symptoms too. Her Dr said to take Vit. B and potassium. I have been craving baked potatoes lately. I think I may make a trip up to Rite Aid today and get some vit b and calcium. I was talking to John last night about my osteoporosis (which is medicine induced). I prob should start taking calcium again. But, I want a diff pill. the pill i currently have is like a freakin horse pill. ITS HUGE.

One thing that I"ve noticed about how my life has changed is that my day is literally consumed by medical things. Dr. appts, med refills and med bills (ugh).  I hope to GOD that these medical bills dont stop us from being able to buy another house. Im getting very anxious about that. I truly want to move. I feel that this house has aided to my illness. I think there is mold in it. And then there is the fact that I feel totally useless when it comes to house stuff. I'm so tired from working all day and doing the "mom" thing that I can't clean or pick up around here.

Oh well, my Johnnie really helps me in that department. I just feel bad that he even has to bc he works so hard. 60+ hours a week is hard on anyone. and then he comes home and does dishes, laundry.... he is truly amazing. <3..

wow... what a year (well almost)

First, I need to say that I'm sorry that I havne't written in a while. I've been going through a LOT of depression and a LOT of health stuff to say the least.and I didn't want to be a "debbie downer" but I think journaling helps my grieving process.. so where to start..???

........Last January (2011) when I posted last, I had been experiencing REALLY BAD headaches, anxiety, chest pain and high blood pressure from the Remicade infusions that I had in December. And I was in the process of switching to a new Rheumy at the Cleveland Clinic.

Update: headaches did finally subside for a while. However they did come back in April... more on that in a minute. Blood pressure finally came down with medication that I had to switch to another in the past 2 months. Anxiety finally went away but only after my flare subsided that was in my rib.

wow.. so much to tell... trying to figure out how to do this.. chronologically or medicine wise? lol 
chronologicially it is...

February- saw my new ra dr. his name is Dr burg at the Cleveland clinic. LOVE HIM. he is very up front, listens and honest with me. love him love him love him... john went with me to this visit and he LOVED him too. I feel very safe in his hands. I was only on methotrexate and prednisone for ra when I saw him. Decided to switch to Enbrel when we got back from our family vacation to Disney.  All the meanwhile, I was driving back and forth to Columbus bc I was working on a HUGE project for the company. 2 hours each way every day...puts a lot of strain on my neck and arms and shoulders. So, I spent a few nights in Columbus and drove back the next day. This travel lasted through May.

March- Started to flare bad. Ribs felt like they were broken. Couldn't breathe very well bc of the pain. Increased my prednisone so we could get through our vacation. Dr Burg even called me on our way to the airport at 7pm to make sure i was doing ok for the trip. Did i mention that I LOVE HIM? lol
Disney went as good as expected. I didn't get a wheelchair, but I prob should have for the last 2 days. We were standing in line for the Aerosmith roller coaster and i broke out into a cold sweat, fever (yes, flu like symptoms comes with this disease sometimes) and I couldn't stand on my feet anymore. I had to sit down in line. Thank goodness it was a long wait. I have no idea how i got through that day. but i did. john rode some rides with the kids while i sat on a bench at times. I am glad I was able to ride some rides, but i just couldn't stand anymore. I couldn't wait to start Enbrel as soon as I got back. THEN I GOT SICK on the last day at Disney. I had a sinus infection and pneumonia for the next month. NO ENBREL for Tonya... :( I cried.

April: I was so sick the entire month of April and my flares were just getting worse. When I coughed I was throwing up. It was terrible. I was so depressed. Outdoor soccer season was starting soon and I really wanted to try to play. The fatigue was unbearable.  I was so optimistic that Enbrel would work. At the end of April, I took my first Enbrel shot.

May: May was a very difficult month. I was to go to Harrisburg PA for a summit for work. I was not able to go and my director had to go in my spot. :( Thank goodness for him. He has RA too, and he is on Enbrel too. I couldn't make the trip to Harrisburg bc I was still sick, and my back had really done a number on me. I have no idea how I hurt it, but my legs were tingling, my thighs and butt were numb and I could barely walk. I was getting weekly massages but they didn't seem to help. My wrists and hands were still swelling quite a bit and were so tight. The RA just didn't seem under control yet. :(

June: I had a week long training to conduct in Atlanta. I was still on my Enbrel. Let me tell you that traveling with a medication that is administered via syringe and also needs to be refrigerated is such a pain in the A>>. I also realized that I was STILL not over my sinus infection/pneumonia. I could barely talk by the end of the week. and I was the trainer. :( THANK GOODNESS FOR MY NEW TEAMMATE. This was her first training session and she really saved my butt that last day or two.

I really needed some time to myself so I extended my stay and went to Savannah for the weekend. I needed to destress, and just have some ME TIME. I rented a red camaro and boy was it fun! I had icey hot patches on my back 24 hours a day but darn it, i wasn't wasting this opportunity. I went on a ghost tour, had lunch at Paula Dean's Lady and Sons restaurant, went to Tybee Island and laid on the beach and read a book under an umbrella for 2 days!  By the time I came back home, my back had started to feel better. But the RA tightness and pain was still there. And I was STILL throwing up non stop. I would say that I threw up about 15 times a day. I coudln't keep anything down. I went and saw my GI dr. They did an upper gi and inserted a ph level indicator in my throat. The results were somewhat inconclusive but they knew that I wasn't throwing up bc of acid reflux. Something else was wrong.

July:
John and I went away for 4th of July. It was supposed to be a romantic weekend. My stomach hurt so bad and I hadn't gone to the bathroom in 7 days. I tried mylax, dulcolax, tums, amitiza.. I finally had to do a colon clense with some nasty drink. AND then I had to have a colonoscopy. The results of the colonoscopy were negative for ulcers, any kind of immune system disease of the colon or any cancer. BUT he did say that I may have a blockage and to continue to take my mylax and amitiza daily... and this weird thing we call life continues.... OHHH and the headaches... OMG.. they started again, but my bp was normal. I was in the ER with headache pain 3 times in July. They had to give me some kind of shot with morphine and other stuff in it to make the pain go away. One time, I slept for 18 hours bc of the pain med.

August:
As the 1 yr anniversary of my diagnosis approached, I became very sad. I just felt like there was no way out of this. I literally felt like i was in a train tunnel and couldn't see any light at the end. I had days where I just laid in my bed and cried ALL DAY... I was on prozac and it had been increased in June. I don't think the increase was a good thing. I seriously almost checked myself in to the psych ward. It was that bad. I called my PCP and we switched me to a diff anti depression med. My headaches continued though. I knew that I had to start accepting this. It had been 1 yr and I felt like I was still at square one... How do i do this, is what i kept asking myself. So, I scheduled a dentist appt. Something that I had been putting off but I had a tooth ache and wondered if maybe that's where the headaches were coming from. Well, what do you know... I needed a root canal. hmm.. pain? yes, but it was on the other side as to where i normally get my headaches. So, the dentist did xrays too. I went back at the beginning of September for the results and consultation of what we should do. but in the meantime, i got the root canal to hope to stop the pain. It worked for that tooth, but not the headaches. Along with the dentist appt, I sheduled an appt with a holistic dr in West Virginia. I was getting tired of taking all of these medications. I wanted to check my options. The holistic dr wanted me to stop all of my ra pills. I stopped them for one week, and then i saw my dentist in September.

Sept:
The consultation with the dentist went OK. We discussed the cavity and root canal that needed fixed. THEN, she takes out my xrays. She breaks it to me that I have bone erosion in my jaw on my right side. Half of my jaw joint is gone from RA. NO WONDER I"VE HAD SO MUCH PAIN!!!! THEN, she tells me that I have a mass in my sinus. She can't tell what it is, but I need to have a jaw surgeon look at these two issues. I get into see the jaw surgeon on sept 12. He takes a 3d xray and sees the bone erosion and a mass in my sinus that's about 2/3 the size of my sinus. He says it needs removed. So, i'm sure this isn't helping my headache problem...He also says that my bite will continue to worsen as my jaw erodes. One day I will not be able to close my mouth and that's when the jaw reconstruction will happen. oh what joy.. ;)

I have a dr appt with Dr. Burg at the Cleveland Clinic on Sept 13. We discuss my jaw erosion and how i'm still having quite a bit of pain and swelling and stiffness. He thinks that the Enbrel is not working. AND he thinks it was tied to the numbness and tingling I had in my legs...It was effecting me neurologically. NOT GOOD.
We discussed my going to see the holistic dr. Dr burg was not very happy with me. He said that I had to make a choice, medicine or holistic. We talked about the erosion some more and how my RA is already attacking my bones. We had to get more aggressive and try something else. Something that we hadn't tried before. He suggested Rituxan.

Rituxan is a chemotherapy drug that is used in some RA cases but mostly used for Non Hodgkins Lymphoma cancer patients. It attacks a certain part of the immune system called B Cells. All of the other drugs that I tried before (Plaquinelle, Remicade, Enbrel) were all TNF blockers. So, Rituxan works different. BUT, it also kills people, as do the other drugs but this one is pretty much immediate). 1 in 8000 don't make it through the first 24 hours after the infusion bc it kills the bcells too fast and there is a reaction at the infusion site. 1 in 30000 contract a virus called PML and that kills them within 5 months. There is no cure for PML either.

I had some choices to make. And again, I went home and cried for 2 days straight. And again, I almost checked myself into the psych ward. I was sooooo scared. and I still am. I would look at my kids and john and wonder what it would be like for me not to be there for them. I don't want to die. But i don't want to live in a wheelchair and be in unbearable pain for the rest of my life either. And lets not forget that RA can kill you too... So basically, I have to pick my poison.  I chose Rituxan.

My infusions are at the Cleveland Clinic cancer center at Hillcrest hospital. I had my first one last Tuesday. They gave me some pre IV meds. An antihistamine, tylenol, prednisolone, and another anti inflammatory called solo..something.. i don't remeber the name. During the infusion, I had some reactions. My tongue swelled and I had some funny taste in my mouth. They slowed the drip and it went away. I got really hot and sweaty, it finally subsided after a while. I was really pale afterwards and kinda sick to my stomach. BUT I couldn't believe how good i felt the next day!!! It was truly amazing. The 2nd day after the infusion, I had stomach cramping, diahrrea, and my arm started to hurt (the arm that I had the IV in). The arm pain was getting worse and it was along my vein. I was getting worried. I called Dr. Burg and we discussed the pain that i was feeling. He advised to go to Urgent care and have them look at it.

Urgent care dr was a little concerned bc my arm was a little swollen and warm. Now, mind you, I had made it past the 24 hour "deadly" reaction time period, but this still didn't feel right. He sent me to the ER as he didn't have an ultra sound machine to look at my veins for a clot. The ER dr did find a clot in my arm. Its in the vein that they used for the infusion. The clot extends from my elbow to my neck. They said to take anti inflammatory and use a heating pad and it should go away on its own. Guess we'll be using the other arm on Oct 11 for my next Rituxan infusion.

OH, and the mass that was in my sinus... They took it out 4 days prior to my Rituxan infusion. It was A LOT bigger than they originally thought.. but it was non cancerous. I am very grateful to my sister and grand father for taking me that day as I was sedated for the procedure. And to my friends and family for calling or IM'ing , facebook messaging or texting to check on me. <3 u!

I also want to send a "shout out" to all my friends and family who have been supportive and loving through all of this. This is such a rough and misunderstood disease. PPL think just bc it has the name "arthritis" on the end of it that its like osteoarthritis.. I can just take some tylenol...doesn't work like that. My immune system is one crazy super woman bitch! Guess we have a boxing match to continue...

Where are my gloves?   (( hmm...maybe i should line them with steel... ))