Last post I believe brought us up to around Feb of last year. Means we've got a year and nearly four months to cover. Guess this will be the post where my world and perspective on life really changed.
I was married at this point. Had been since 7/7/7 to Rick. We existed in the same space; things could have been better. In his world getting on with having a family would make things better. So in Jan of '09 on my birthday I stopped taking my birth control meds that I'd been on since I was 18 and we got on with the great attempt at munchkinness. Except of course that requires sex, but that's another issue entirely. Anywho, within 6 weeks, the inflammation issues began to appear. Not just the ones I had had with the pericarditis, but others. I mention the birth control thing ONLY because it was the only thing in my world that had changed at that time. I'd been taking the same medications for it and my low thyroid since I was 18. Nothing.. else.. changed. So in my mind, the only thing that could have set off whatever this turns out to be was some chemical something or other that being on the birth control so long had kept one way and then going off of it changed it somehow or set it off. *shrugs* I'm of course no doctor, but I figure it noteworthy only because until I went off of it, I never had the issues I have now aside from the heart thing caused by inflammation.
Mid-Feb '09 - Right ankle starts to have some swelling. Doesn't hurt. Can walk on it just fine. Haven't tripped or fallen or tweaked it in any way. Just a bit swelly for no good reason. Also, hands start to hurt. Now about 5 or 6 years ago I was told by a doc I had carpal tunnel in my hands. I'd find out later this wasn't an accurate diagnosis, but was close. Points for effort. Anyways, hands started hurting. Just an achy feeling at first, but it would get worse. It got to the point where I couldn't bend my fingers into balled fists or lets say if you hold your hand out flat/parallel with the rest of your arm and then try to bend your hand at the wrist up or down, i couldn't more than a 1/4 inch. It's like my hands were just seizing up. So I hit up the new doc's/nurses offices they'd put in in an adjoining building at my work to see what was up since the co-pay to go there was cheaper than heading out to normal doc. The nurse practitioner there was a complete idiot. Just need to say that now. She hadn't a clue what was up with my hands so they rubbed some icyhot type goop on it and wrapped them and sent me on my way and oh, also had no clue what was up with the foot so advised me to take some tylenol. ... wow. Went back the next day when the hands still weren't improving and told them they had my money and needed to help me because I couldn't work as 99% of my job involved typing and I wasn't exactly in a state where I could use my hands very well. I was lucky that day as an actual doctor was in the house and took at look at my hands and said I had
tendonitis; told him that along with the pain the last two fingers on both hands and down into my hand on those sides would go numb/tingly. Apparently that means tendonitis and it's when the other three fingers have that issue that you have carpal tunnel. FYI.
So as nurse lady didn't have a clue and this guy seemed to but I had no trust in these people at this point I made an appt with a hand specialist person to get the 411. Sure enough, tendonitis. This however didn't explain what was up with the ankle thing which the doc back at work also didn't have any insight on other than saying I must have done something to upset it though I knew I didn't because it didn't hurt. Specialist guy was concerned over the pain in my hands (thankfully) but said the best he had to offer was just taking meds to keep the pain away. Hooray better living through chemistry *sighs* So I take anti-inflammatories in fairly large doses and get back to work. They seem to help the hands, but the ankle thing keeps getting worse. Telling myself it had to get better on its own at some point I just let it go. By letting it go it just kept on swelling. To the point where come April I was having difficulty wearing my sneakers after having undone the laces a bit and was starting to have trouble walking on it.
Now keep in mind the pericarditis is still coming/going at this point. Cardiology during this time has given up on me and said they don't have a clue what's setting it off or why it's coming back so frequently and have now referenced me to Dr P in Rheumatology. Hooray Dr P! I have to admit given cardiology giving up on me I didn't have a lot of faith in Dr P at first just cause everyone seemed to be at a loss. Heck, I didn't even know what a rheumatologist was at this point, but Dr P was honest and said after reviewing my history he didn't have a clue either, but was determined to try and help me figure out what was going on. That at least gave me a little hope. And sure enough, the tests began. Think I gave 12 vials in one sitting. They should have just installed a tap; would have made things a lot easier over the last year *grins* These days the vampires know me by name, but I digress. 12 vials later and sure enough, inflammation. Well no shit. *laughs* I could have told him that, but docs of course like to see it in writing. Thing was this was CRAZY high inflammation. As in, he wasn't sure how I was sitting there talking to him about the results without just cringing. Well, by the time all the results came back around beginning of May, I definitely wasn't comfortable, but it was bearable. After going through the pericarditis, you just learn to deal with pain and assume it'll go away eventually. My foot thing was pretty bad by May. My left foot had started to have some swelling too and both were hard to walk on. My hands were still giving me fits. And I had developed this overall "ache" that made it very difficult to get out of bed in the morning and move around for the first hour or two. Dr P had prescribed me
Celebrex to help but sadly it didn't even put a dent into the various issues going on and building up.
One day in mid-May I finally broke. I called up J, Dr P's nurse, and told her I couldn't take it anymore. My right foot was swollen to the point where it looked and felt like an over-ripe tomato and I was certain that if I walked on it much longer the skin was actually going to split. I told her something needed to be done. She called me back within an hour and said the doc had called in some super steroids called
prednisone and I was to start taking them immediately at 40mg/day. As soon as work was done I headed to the pharmacy and picked up this stuff and started downing it. Good side: within 3 days the swelling in my feet started to go down along with the pain I had started having in them and the hands stuff was starting to feel better to and getting out of bed in the mornings wasn't so awful. Down side: I began eating food like it was going out of style. I was ravenous. Constantly. And I hadn't been warned that one of the side effects of taking this steroid, especially at this high dose, was that I would constantly be hungry. So I ate. A lot. Nearly ever waking moment. I gained 20lbs in just over four weeks. It was the most I had ever weighed in my life. And by the time I realized what was happening it was too late. Thanks to the sudden weight gain in a very short period of time, my skin on my stomach didn't just stretch, it split. My stomach from just below my ribs on one side to just below my ribs on the other looks like Wolverine from the X-Men has taken his claws to my stomach in ribbons from an inch long to about 5-6 inches long in places. And they're not just the average stretch marks. The skin texture is completely different than the surrounding skin in the gashes and they're a very very deep dark red. I never had a beautiful figure, but now... Well, lets just say I can't blame my husband at the time for not wanting to touch me.
If memory serves, I believe I stayed at the 40mg's for just over two months, maybe three. The swelling in my feet went away completely though I was still having pain in them and my hands. It wasn't every day, but the prednisone wasn't able to keep it away, especially once the doc started trying to ween me off of it. The celebrex hadn't done any good. I was also put on
Meloxicam at some point over the summer to try and help too along with
Plaquenil. Dr P had given me a diagnosis, but it wasn't one that I think he and especially not I were happy with;
Undifferentiated Connective Tissue Disease (UCTD). Cliffnotes is I had a connective tissue disease and this label is a catch-all for a connective tissue disease that acts like rheumatoid arthritis and lupus, but is actually neither. You kind of get to experience the worst effects of both but don't meet the minimum criteria for the docs to tell you definitely that you have one or the other. So I guess I felt I kind of got thrown into the "we don't know still so here's the closest thing we can find". And I admit, I've got a LOT of what's listed under UCTD. But SOMETHING has to be causing it. Something has to be the source of the inflammation that sets it all off and keeps me in a constant state of pain that only drugs can keep away.
Here's where drug #3 comes in:
Methotrexate. There are lots of different flavors of drugs to treat UCTD. Sadly, there's not one that can treat all the symptoms I was having so I get the drug cocktail treatment. Doc knew I was still having issues with the pain as I was paying him specialist co-pay every 4 weeks to remind him that I still couldn't go a day or two without the pain coming back and it always settles in my hands no matter what. Also visiting the vampires every 6-8 weeks for bloodwork to keep an eye on the inflammation levels. So Dr P's next step up in the drug cycle, because he told me if what we were doing didn't make it better we would have to go to stronger drugs with worse side effects, that the next step up was methotrexate. As it's difficult to experience pain on a daily basis when you can still remember a time when there was no pain at all, I was willing to try whatever he recommended. He's the doc after all. This particular drug had a side effect Rick, nor I, were very pleased with; guaranteed birth defects. He was already upset that we hadn't been able to have a munchkin since Jan and that all of this health stuff had occurred and further delayed the start of his family. Now I was going to be on a drug where I was flat out told that if I got pregnant they would recommend termination immediately. I remember trying to explain all of this to Rick. I had asked him to come to appointments with me since the condition began in Feb. To try and understand with me as I learned from the doc what was going on and the drugs I was having to take what to expect. But he never came with me. Not to a single doctors appointment. And when I would try to relay the information after my appointments he didn't seem to care and wouldn't listen. So when I had to come home and tell him that I was going to be on a drug with guaranteed birth defects if we were to get pregnant he just couldn't understand and told me to go back to the doc and tell them that I needed to be on something else. Which I had actually already asked about as I knew he wouldn't take the news well and I had hoped some day to have some additions to the family. Unfortunately, right then, that was the next drug in the treatments for my condition and anything else would likely have even worse side effects. So it was take the methotrexate and go back on birth control and not get pregnant and be able to keep the pain away (in theory) or keep taking the prednisone (which was a steriod you aren't supposed to take for more than a few month row most) and meloxicam and plaquenil and pray for the best and hope the pain just decided that that was enough and would stay away. Given those options, I didn't see that I really had a choice but to try the next level up and see what the methotrexate could/count not do for me.
It was not easy, but I started taking the methotrexate. I don't remember the initial dosage, but we got up to 8.5mg/week which I believe is the maximum you can take of this stuff; was 8 pills for that dose. This started mid-August and though it let me have days in a row without pain, it would still always come back. It always came back. I learned a lot over that 6 months between summer and December.
For instance, there are four cardinal rules to keeping the pain away:
1) Don't stress. At all. Any stress/anxiety will set off the pain.
2) Don't stay hungry. At least three solid meals a day are required and snacking helps. Going to bed still hungry is not an option or you'll wake up in pain. Skipping one of the three meals is not an option as within a few hours the pain will come.
3) Sleep. At least 7 hours minimum and preferably uninterrupted. Anything less and the pain comes.
4) Do NOT deviate more than two hours from taking meds the same time every day. Waiting too long past the normal time lets the pain come.
Makes me feel like a mogwai from Gremlins; "don't feed after midnight" and all that. But the above is true. It's practically a mantra for me. If I abide by these rules, now, more often than not I'm able to keep the pain away. But lets get back to Dec. Well, a little offbeat news for the inbetween. In Sept I left my husband. There are many many reasons why, but the ones that pertain to this story are that not once had he shown any interest in supporting me since my condition began in Feb having never attended one doc's appt though I made him always aware of when they were and had asked him to come so he could better understand what I was going through and how much I needed his support and the fact that I would possibly never be able to give him his family thanks to the drugs I was having to take and may always have to take.... it was just too much. I had needed him in sickness and he hadn't been there for me when I had always been there for him. Sucks when the one person in the world that's supposed to be there for you for anything no matter what isn't. I wish I hadn't had to go through all this alone when there was someone right there that have been holding my hand and telling me it was all going to be ok, even if it wasn't.
Come December we were just coasting through the pain/no-pain days. Saw Dr P again the Mon before Christmas and told him we'd given the methotrexate a change but it just didn't seem to be doing the trick. He recommended staying on it, but going to injection form. *shudders* Now me and the vampires with their needles are all good friends at this point. I go in and they stick me and take my lifes blood and I leave and the needles and stuff stay there. I never ever wanted to take any of that home with me. So the thought of needles and vials and having to press sharp objects into my own flesh just wasn't appealing. Doc said, though, that he'd seen where you could take the same dosage in pill form and have it delivered via liquid injection and get a better result. Well, I certainly didn't have anything to lose at this point. Not being able to have munchkins didn't really matter anymore without a husband so keeping taking the drug wasn't going to change anything there. So 1ml of this stuff delivered via injection 1/week. I get to stick myself in my squishy gut bits at various locations around my bellybutton area. Rubbing alcohol on the top of the vial via the handy cottonball and a good swabbing for the injection area and then the stick. Ugh. Has been just over 5 months of this now and I still hate it every time. Kudos to Dr P, though, the injection method is working a LOT better than the pill version. Within the first few weeks of taking it that way I could tell the difference. There were days in a row of no pain at all and barely any pain in my hands. It hasn't gotten rid of the pain completely, but it's a heck of a lot better than it was.
To give you an idea of the level of pain, here's how things go on a good pain day. If I don't stay ahead of it, the prednisone takes about 5-6 hours from when I take it to kick in. I'll probably be in pain for the next 2-3 days constantly but it's just a dull sore ache. The pain always settles in my hands. It's pretty much a constant. On the worst days... I would say there's been 5 or 6 of these since it began.. *deep breath* On these days I can't move. My feet will swell and I can't walk. My knees hurt as well and my legs and arms from about halfway down past my elbow into my hands and fingers feel like they've atrophied. I can't really move them. And it feels like someone has reached hands into my muscles and clasped their fingers around them tight and then started to slowly twist, pulling on them.. straining them to where they can't relax. It's uuumm.. not the most pleasant of sensations. When I moved out into my own place maybe a third floor apartment wasn't the best idea. Does have a nice view, though. Thankfully since moving in Oct 31 of last year I have only had a couple of these really bad days. Can take awhile to get up the stairs sometimes, but as long as I follow my cardinal rules, the pains manageable and once I'm upstairs and I can just veg till it goes away.
Score on injection, then. Progress made, though we still don't know the root cause of the inflammation and over the spring leading up to about a month and a half ago the pain in my hands has been getting progressively worse. Thank God the rest seems to be under control *knocks on self*. But as hands are one of those things you kind of use constantly, not having full use of them plus pain on top of that can get to be a bit much.
I had another appt with Dr P about a week or so before leaving on a Mexico bound cruise May 1st. Let doc know the hand pain thing was becoming more of an issue and causing issues for me at work as aside from typing, I also have to move boxes around every afternoon which can be weighty and if I push myself to carry something I shouldn't, I'll pay for it in pain in my hands for days following. As a temporary answer, he prescribed me
Tramadol. This wasn't just an anti-inflammatory but an outright pain med. He wanted me to enjoy my vacation without pain and said we'd work on a long term solution when I got back. Oh, I almost forgot. I also pointed out to him at this point an issue I had had since last Nov that I showed him in Dec and then my dermatologists nurse and I just never managed to meet eachother in phone tag to get me an appt before my yearly appt a few weeks ago. I developed what I fondly termed "plague legs". In Nov I started seeing these dark red under skin splotches on my legs. Not a lot at first. But not pretty. I, in my infinite non-wisdom, ignored it. I figured that it was either me needing to change laundry detergent (though I'd been using the same thing for about 9 years) or my allergy to my cats had finally kicked in in a new flavor. Dr P had told me in Dec when I showed him to get with the dermatologist just to make sure what's going on was something trivial and well, like I said, nurse lady and I just couldn't meet up on the phone at the same time so I let it go until my previously schedule yearly appt in May.
Boy did Dr M waggle her finger at me. She wasn't exactly sure (what doc is about anything these days, eh?) what it was but she took a couple of chunks out of the dark spots on my legs for biopsy and mailed them off. By now the plague leg issue had spread from just being located below the knees to working its way up to the top halves of my legs and I was even starting to see a few spots on my arms. Some of the spots on my lower legs even had blisters on occasion :-( So after finger waggling and chunk taking and sewing me up, Dr M took some pictures to use in one of the med student classes she teaches to ask them to try and identify it and once we get the results back, she'll know what it is and then can tell them when they don't have a clue on first glace. Glad my plague leg issue can help teach others ;-)
Results back in says that I have inflammation in my medium and large blood vessels. There's some really long word for that, but we'll just use the abbreviated version above to save my butchering it. Hooray another inflammation issue. Dr M told me to see the silver lining of this fiery cloud that looms over me in that the results of this test and the issue I was having were one more thing they could use to try and give me a proper diagnosis on my condition and hopefully get me some kind of official label for it and look at long term treatment options for it. God bless her and her being awesome moral support. I'm told to go back to the 40mg of prednisone/day to try and get ahead of the blood vessel inflammation. Which sucks because I'd finally gotten my threshold down to 8mg/day. So frakin' close to being off this stuff after a year on it. *sighs* Dr M puts in for her own run of flavors of bloodwork and one of those not so nifty pee in a cup tests; ugh. All but one bloodtest gets done (nurse missed it) and what was done comes back neg except the urine test. Protein in the urine. Yaaaay.
Now I am referred to
Nephrology. Yeah, I didn't have a clue either till I called and scheduled the appt and asked. Something about liver and kidneys. Well, one of the things I have to get tested for every 8 weeks is that the meloxicam isn't effecting them as that's one of its possible side effects. So there's a chance that that's fraking up the results. Also I have to take folic acid every day while I'm on the methotrexate which can also effect liver and kidneys. So could be that too. Or there's the possibility that I let this new inflammation thing go on so long that even though we can see the results of it apparent in the splotches on my legs, that it could potentially be effect things on the inside as well such as my liver and kidneys thus the positive protein result in the test. Introduce new doc; Dr T. She's so amazingly cool. We of course talk about the "what if's" and tests and we're going to do another pee in the cup to confirm that the protein thing wasn't a fluke and if it's still there, she would like to do a biopsy on my kidney. Gah. But after all that, we talk about sci-fi and horror books and sucks and discover we're both big geeks. How awesome ;-) Sure enough, pee cup test #2 comes back positive and I get scheduled for the biopsy. Also got called back in to do that one blood test they missed (
ANCA) and unlike last year, this years comes back positive. One more reason for the biopsy apparently.
Believe this pretty much brings us to present day. I'm taking the 40mg of prednisone again along with everything else and haven't felt a bit of pain anywhere, not even my hands, in the last few weeks. Means I've gotten to play rockband some with the bass again which has been awesome since there's no after play pain effects. My biopsy is now scheduled for next Friday the 11th. Having to take a day off work for it which hoovers and I'm told once the local anesthesia wears off I'm going to feel like someone's punched me in the kidneys for about the next week. Fun times. Oh! And the biopsy itself apparently involves them sticking a really long needle into my kidney to take out a couple of chunks and I'll be peeing blood probably for about 24 hours *blinks* Fun stuff! Wonder why everyone doesn't try it? ...
Good side: In theory, I'm told that this biospy should tell us once and for all if I have what they're pretty sure is lupus now (not generic category of UCTD) or this other really long unpronounceable/spellable thing that they just mentioned a few days ago. To give me an official label, I have to meet a minimum of 6 markers. Right now for lupus I'm up to 4 that they've been able to officially stamp on the card in the last year and 4 months. To be honest, I'm not going to hold my breathe that this one test is going to answer all their questions. If it would, why didn't we do this last year?
Anyways, between me and you I'll admit I'm scared. Stupid, I know. I want to know what's going on, but if it's actually something serious, any time you find out exactly what it is it instantly gets worse and then you gack within a month. No, I don't think it's anything stupid crazy like that. But maybe being suedo-oblivious thus far hasn't been too awful. I would like to be off the prednisone, though. And the methotrexate some day so that I might be able to go forth and have munchkins if the right guy comes along. Then again, I also get to consider the 50/50 chance of my passing on whatever this is to my future children. Considering I wouldn't wish the pain I've had with this connective tissue disease upon my worst enemy, I struggle with the thought of knowing I could have prevented bringing someone into the world that could potentially have to deal with this some day.
Choices choices.
Think that brings my ramblings current. Will probably post Thurs before Fri's biopsy and let everyone know who gets to take care of my kitties if the worst should happen ;-) I promise to try and keep the drama to a minimum, though. Especially if any of you actually made it this far in the reading. Think it's time to appease the hunger gods. Hope everyone has a great week!
*HUGS*
