I've been on Rem.icade for several years, but when I first started on it I was also taking Meth.otrex.ate, a drug that you absolutely cannot be taking when ttc. In September '05 I got off the Meth.otrex.ate, but stayed on the Rem.icade because we knew that we were going to start ttc. I knew from my wonderful Dr. W back in Houston that Rem.icade worked better with Meth.otrex.ate, but it could still work without it, just not as effectively. Well, it's been over 2 years since I got off the Meth.otrex.ate, and I did exceptionally well on just the Rem.icade alone. But Dr. C thinks that I've finally started building up antibodies to the Rem.icade which makes it ineffective. She wants me back on the Meth.otrex.ate, but she did warn me that it might be too late for it to help with the Rem.icade. But I can take the Meth.otrex.ate with another biologic drug like En.brel or Hum.ira. So because she wants me back on the Meth.otrex.ate I have to go back on BCP. She said she's not calling in the Rx yet. She wants me to wait 4 weeks to see if the Rem.icade alone will help. But she's 99.9% sure that it's not gonna help without the Meth.otrex.ate. (And quite honestly, I'm with her, I don't think it's gonna get any better without it.)
Dr. C thinks the pain in my hip is bursitis, pockets of fluid that build up to reduce friction between tissues of the body. She said that it usually forms in the hips of arthritics because they start to walk funny to ease the pain they're experiencing in the knee or ankle. And I can see how that would be true. I have been limping and favoring my left knee more and more throughout this flare. (from medicinenet.com: Trochanteric bursitis frequently causes tenderness of the outer hip, making it difficult for patients to lie on the involved side, frequently making sleep difficult. It also causes a dull, burning pain on the outer hip that is often made worse with excessive walking or stair climbing.) So she gave me a shot of cor.tis.one in my hip and told me it should start to work in about a week, and until I started getting some relief that I needed to take it easy. (I'm pretty good at that, but thanks for the directive. Now I can have J continue to do the housework! lol)
I'm REALLY upset about the Meth.otrex.ate. This is the last thing that I wanted. My hope was that I could go on a more ttc friendly anti-inflammatory so I could still keep taking the Clomid. I'm upset about having to go back on BCP. I hate BCP!! But more than that, I'm upset that my ttc is now officially over. Well, I guess I do still have one glimmer of hope in that area. I'm not going back on the Meth.otrex.ate until this cycle is over, so I guess technically I do still have one last chance at getting pregnant. But once this cycle is over I have to call Dr. K and tell him I have to go back on the BCP because I'll have to be on the BCP for a few weeks prior to taking the Meth.otrex.ate to make sure I'm covered. (Like this PCOS'er needs BCP. I don't O on my own anyway. But it saves their butt from lawsuits I guess.)
There are 3 good things that will come out of all this. (I'm trying to find the silver lining, but it ain't easy folks.)
1. The what-ifs and the unknowns are now put to rest. I have a plan now. It's certainly not a plan that I like, but it's a plan nonetheless. (I had to look that up and find out if it was all one word or three words. lol)
2. I get to have lasik sooner rather than later.
3. I will start to feel better soon.
But no matter how much "good" comes out of all this, my heart is still broken because I might never have J's child.
Showing posts with label Arthritis. Show all posts
Showing posts with label Arthritis. Show all posts
Friday, December 21, 2007
Thursday, December 20, 2007
Neverending Flare
So I'm heading in my third month of my arthritis flare. I'm 50% better than I was when I wrote this, but I'm not back to normal just yet. I'm still having trouble with my hands, though not to the extent that I was before. But it's still very hard to do anything repetative with my hands because within hours they puff up like balloons. I'm also having trouble sleeping because of hip and shoulder pain. I'm a side sleeper, but when my left hip and my right shoulder hurt, I have no side to sleep on. So I've had to learn to sleep on my back. I do fine for a while, but I innately turn to one side or the other during the night only to be awakened with sharp pains shooting through my leg or my shoulder. UGH!!! So I roll back onto my back. (If I do ever get another BFP this could pose a problem.) And in the mornings when I wake up I'm stiff for about 20 minutes. It makes it hard to do anything, and all I want to do is just lay there all day without moving a muscle, but moving is the best way to work through the stiffness.
I had another Rem.icade infusion today, but like last time I'm just not feeling as good as I normally do following the infusion. Normally I can see and feel results within hours of receiving treatment.
I have another appointment with my new rheumatologist, Dr. C, tomorrow. I'm planning to ask her about an anti-inflammatory. Hopefully I can get through this cycle before having to take it. If there's no BFP then I'll start taking it to see if it can get me through the flare. I'm hoping that it can get me under control and living in a manageable amount of pain so we can reassess our options. I'm still going to ask for adoption packets in January, but I'm hoping to be able to continue taking the clomid while we doing all the research and getting the balls rolling.
If you're the praying type, please pray that this flare ends soon. While my prayers have been answered in that I'm not struggling 24 hours a day, I'm still in a great deal of pain. I just want the pain to get to a manageable level so I can feel like myself again. Thanks!!!
I had another Rem.icade infusion today, but like last time I'm just not feeling as good as I normally do following the infusion. Normally I can see and feel results within hours of receiving treatment.
I have another appointment with my new rheumatologist, Dr. C, tomorrow. I'm planning to ask her about an anti-inflammatory. Hopefully I can get through this cycle before having to take it. If there's no BFP then I'll start taking it to see if it can get me through the flare. I'm hoping that it can get me under control and living in a manageable amount of pain so we can reassess our options. I'm still going to ask for adoption packets in January, but I'm hoping to be able to continue taking the clomid while we doing all the research and getting the balls rolling.
If you're the praying type, please pray that this flare ends soon. While my prayers have been answered in that I'm not struggling 24 hours a day, I'm still in a great deal of pain. I just want the pain to get to a manageable level so I can feel like myself again. Thanks!!!
Tuesday, November 27, 2007
Decision Time
J and I came to a VERY difficult decision Monday night that this is going to be our last cycle ttc. I'm just in too much pain from my arthritis, and I'm going to have to go back on the anti-inflammatory before I have some permanent damage to my joints. I really don't want to give up, but it's just not worth risking further damage to my joints to keep going. I'm hoping that the Met will straighten out my cycles to make me start o'ing again, and if that happens then we may try again once I get my arthritis under control, but for now...this is it!!! And hopefully the Met will help me get some weight off too so that's always a plus for an arthritic!!
The other decision we had to make was whether or not to do the IUI this cycle. And after talking to J about it, we decided we were 0-2 with the IUI, but we've at least had 2 successes with BD'ing, so we're starting the BD'ing thing this week.
Don't worry...I'm not going anywhere. I'm still gonna be blogging away and reading up on all you ladies!! So no good-byes from me just yet!!! ;o)
Ultimately we're hoping that we'll get a BFP in a couple weeks so we won't have to throw in the towel, but the realist in me is preparing for the road to adoption!
The other decision we had to make was whether or not to do the IUI this cycle. And after talking to J about it, we decided we were 0-2 with the IUI, but we've at least had 2 successes with BD'ing, so we're starting the BD'ing thing this week.
Don't worry...I'm not going anywhere. I'm still gonna be blogging away and reading up on all you ladies!! So no good-byes from me just yet!!! ;o)
Ultimately we're hoping that we'll get a BFP in a couple weeks so we won't have to throw in the towel, but the realist in me is preparing for the road to adoption!
Tuesday, November 20, 2007
Medical Care Decisions
Arthritis Care...
Recently I've had to make a few decisions about my medical care. The first being with my rheumatologist. I was diagnosed with psoriatic arthritis when I was 17, and since then I've seen several doctors that have helped control the pain. When we moved here to BR I had to find another rheumatologist, and that task was pretty much tainted by the wonderful doc I had in Houston, Dr. W. It was very hard to leave him because he "got" me. He had a very cynical personality, but great bedside manner. We got along great, and I trusted him completely. And he knew me very well. I'm not a complainer when it comes to my arthritis pain. Over the years I've learned to live with the pain associated with arthritis. I was able to find a level of pain that I was able to live with on a daily basis because I knew that there would never be a completely pain-free day. And when I had a flare-up I would call Dr. W and tell him, and without making me come in, he would prescribe meds to get me over the hump and back to "my normal".
When I found out we were moving I researched rheumatologists here in BR, and found out about a doctor, Dr. M, that was very knowledgeable, but most people said he didn't have much bedside manner. And I found that to be completely true at my first appointment 2.5 years ago. But, according to everything I had read, I was seeing the best doctor in BR. So I decided I would just stick with him because for what he lacked in bedside manner, he made up for in his knowledge of rheumatology.
Since my LAP a month ago I have been in the middle of a HORRIBLE flare-up, and so when it first started I did what I had always done and called Dr. M's office and told them the situation. The nurse just kind of sat there, and so I asked, "Is there anything that Dr. M can prescribe to get me through the flare, like a Med.rol dose pack (what Dr. W had always prescribed for me)? She said, "Well, let me talk to Dr. M and I'll get back with you." By the next day I was miserable, and I hadn't heard back from her so I called my pharmacy, and sure enough, he had called it in, but the nurse failed to call me back to let me know. So basically I went though an extra day of pain thanks to her. Can't fault Dr. M for that, but I was livid with his unfriendly nurse.
A week later I called back because the dose pack hadn't given me any relief, and Unfriendly Nurse told me to make an appointment to see Dr. M. I went in that day, and was furious when I left because I had been completely dismissed. He told me I had carpel tunnel syndrome (CTS) and there was nothing I could do but wear a brace and take pain pills at night to get me through the night. Now, I'm no doctor, but I KNOW arthritis pain, and what I was feeling was 100% arthritis pain. What I couldn't believe was that I was hurting ALL OVER, as in EVERY joint in my body ached, and he had the nerve to tell me it was CTS. I left with the Rx for Lo.rtab, but I was furious!!!
Another week later I was still in LOTS Of pain and taking WAY more Al.eve than I was supposed to take, so I called back to ask if Dr. M would move up my Rem.icade infusion. Get this...She said, "He'll let you move it up one week, but you can't go in this week." WTHeck???? I had to go through ANOTHER week of pain before I could have my infusion!!! I was fuming, but honestly, there wasn't anything I could do at that point. So I continued taking more Al.eve than I should have been just to get me through the day, and I was taking the pain pills just to sleep. I somehow, by the grace of God, made it to my new Rem.icade appointment, and when the nurse in the infusion lab asked me what my pain scale was I told her a 9 out of 10. She was floored!! I had NEVER in 2.5 years EVER felt this bad! She asked me if I had told Dr. M, and I started to cry. I told her the story, and she said, "Girl, you gotta get you another doctor."
Sadly, the Rem.icade infusion didn't help either so SOMETHING was going on. So I called Dr. M back to tell him, and he had me come in again. That was a COMPLETE waste of time! He did give me an anti-inflammatory and another pain pill RX this time, but I still felt like he wasn't hearing me, and he didn't believe me when I told him how much pain I was in. Dr. W would have ordered all kinds of labs and x-rays to view my joints, but Dr. M did NOTHING of the sort! When I left I decided I had given him enough chances to help me, and it was time to see someone else.
Yesterday I met with Dr. C (another doctor in the BR Clinic), and told her everything that had happened with Dr. M. After talking with me and examing me for almost 30 minutes she said she wanted to keep my meds where they were at this point, BUT she ordered labs and x-rays of my joints. FINALLY!!! So when my labs and x-rays come back she said she would call and we would discuss what to do to get me out of this horrible nightmare.
---------------------------------------------------
Infertility care...
I called the doctor's office that I am being referred to in January, and asked them what their prices were for office visits, IUI's, u/s, blood work, etc...I told her that the doctor would be added to my insurance once the Network Adequacy Hardship had gone through, and she said, "Well, once you come here, your insurance will quit paying anything because you are now diagnosed with a problem." Huh??? Then what good is having an RE on your insurance??? She said I would pay them $150-220 at the first visit, and then they would submit it to my insurance company and if they paid anything they would give me credit for future services or send me a refund.
I don't know that I want to go through the hassle of getting the hardship if in the end nothing will be covered. So I think we've just about come to the decision that we'll just give the Clomid/Met 6 months with my OB, and if nothing happens then we'll throw in the towel. At that point we will have been ttc for 2.5 years. I think that's plenty long enough for this gal to make the decision to give up and move on.
----------------------------------
Accu Care...
The last appointment I had with my accupuncturist (for arthritis care, not infertility) was the day before we left for Jamaica. When he asked me when I could come back in the next week I told him we were going to be in Jamaica the following week so I would have to come back in the week we get back in town.
I go through the appointment, and after making my next appointment Mr. C was trying to get me to buy $100 worth of herbs and a $50 tube of cream to rub on my joints. While I'm sure they work fine, I told him that we just couldn't afford to spend $150 for 2 sessions a week, plus another $150 for herbs and cream. To which his reply was, "You can take a trip to Jamaica and you can't afford this? I'm just trying to help you here." I was floored!!!! Did I really just hear that? I grabbed my purse and headed out the door. Needless to say I WILL NOT be going back for my appointment this afternoon.
Recently I've had to make a few decisions about my medical care. The first being with my rheumatologist. I was diagnosed with psoriatic arthritis when I was 17, and since then I've seen several doctors that have helped control the pain. When we moved here to BR I had to find another rheumatologist, and that task was pretty much tainted by the wonderful doc I had in Houston, Dr. W. It was very hard to leave him because he "got" me. He had a very cynical personality, but great bedside manner. We got along great, and I trusted him completely. And he knew me very well. I'm not a complainer when it comes to my arthritis pain. Over the years I've learned to live with the pain associated with arthritis. I was able to find a level of pain that I was able to live with on a daily basis because I knew that there would never be a completely pain-free day. And when I had a flare-up I would call Dr. W and tell him, and without making me come in, he would prescribe meds to get me over the hump and back to "my normal".
When I found out we were moving I researched rheumatologists here in BR, and found out about a doctor, Dr. M, that was very knowledgeable, but most people said he didn't have much bedside manner. And I found that to be completely true at my first appointment 2.5 years ago. But, according to everything I had read, I was seeing the best doctor in BR. So I decided I would just stick with him because for what he lacked in bedside manner, he made up for in his knowledge of rheumatology.
Since my LAP a month ago I have been in the middle of a HORRIBLE flare-up, and so when it first started I did what I had always done and called Dr. M's office and told them the situation. The nurse just kind of sat there, and so I asked, "Is there anything that Dr. M can prescribe to get me through the flare, like a Med.rol dose pack (what Dr. W had always prescribed for me)? She said, "Well, let me talk to Dr. M and I'll get back with you." By the next day I was miserable, and I hadn't heard back from her so I called my pharmacy, and sure enough, he had called it in, but the nurse failed to call me back to let me know. So basically I went though an extra day of pain thanks to her. Can't fault Dr. M for that, but I was livid with his unfriendly nurse.
A week later I called back because the dose pack hadn't given me any relief, and Unfriendly Nurse told me to make an appointment to see Dr. M. I went in that day, and was furious when I left because I had been completely dismissed. He told me I had carpel tunnel syndrome (CTS) and there was nothing I could do but wear a brace and take pain pills at night to get me through the night. Now, I'm no doctor, but I KNOW arthritis pain, and what I was feeling was 100% arthritis pain. What I couldn't believe was that I was hurting ALL OVER, as in EVERY joint in my body ached, and he had the nerve to tell me it was CTS. I left with the Rx for Lo.rtab, but I was furious!!!
Another week later I was still in LOTS Of pain and taking WAY more Al.eve than I was supposed to take, so I called back to ask if Dr. M would move up my Rem.icade infusion. Get this...She said, "He'll let you move it up one week, but you can't go in this week." WTHeck???? I had to go through ANOTHER week of pain before I could have my infusion!!! I was fuming, but honestly, there wasn't anything I could do at that point. So I continued taking more Al.eve than I should have been just to get me through the day, and I was taking the pain pills just to sleep. I somehow, by the grace of God, made it to my new Rem.icade appointment, and when the nurse in the infusion lab asked me what my pain scale was I told her a 9 out of 10. She was floored!! I had NEVER in 2.5 years EVER felt this bad! She asked me if I had told Dr. M, and I started to cry. I told her the story, and she said, "Girl, you gotta get you another doctor."
Sadly, the Rem.icade infusion didn't help either so SOMETHING was going on. So I called Dr. M back to tell him, and he had me come in again. That was a COMPLETE waste of time! He did give me an anti-inflammatory and another pain pill RX this time, but I still felt like he wasn't hearing me, and he didn't believe me when I told him how much pain I was in. Dr. W would have ordered all kinds of labs and x-rays to view my joints, but Dr. M did NOTHING of the sort! When I left I decided I had given him enough chances to help me, and it was time to see someone else.
Yesterday I met with Dr. C (another doctor in the BR Clinic), and told her everything that had happened with Dr. M. After talking with me and examing me for almost 30 minutes she said she wanted to keep my meds where they were at this point, BUT she ordered labs and x-rays of my joints. FINALLY!!! So when my labs and x-rays come back she said she would call and we would discuss what to do to get me out of this horrible nightmare.
---------------------------------------------------
Infertility care...
I called the doctor's office that I am being referred to in January, and asked them what their prices were for office visits, IUI's, u/s, blood work, etc...I told her that the doctor would be added to my insurance once the Network Adequacy Hardship had gone through, and she said, "Well, once you come here, your insurance will quit paying anything because you are now diagnosed with a problem." Huh??? Then what good is having an RE on your insurance??? She said I would pay them $150-220 at the first visit, and then they would submit it to my insurance company and if they paid anything they would give me credit for future services or send me a refund.
I don't know that I want to go through the hassle of getting the hardship if in the end nothing will be covered. So I think we've just about come to the decision that we'll just give the Clomid/Met 6 months with my OB, and if nothing happens then we'll throw in the towel. At that point we will have been ttc for 2.5 years. I think that's plenty long enough for this gal to make the decision to give up and move on.
----------------------------------
Accu Care...
The last appointment I had with my accupuncturist (for arthritis care, not infertility) was the day before we left for Jamaica. When he asked me when I could come back in the next week I told him we were going to be in Jamaica the following week so I would have to come back in the week we get back in town.
I go through the appointment, and after making my next appointment Mr. C was trying to get me to buy $100 worth of herbs and a $50 tube of cream to rub on my joints. While I'm sure they work fine, I told him that we just couldn't afford to spend $150 for 2 sessions a week, plus another $150 for herbs and cream. To which his reply was, "You can take a trip to Jamaica and you can't afford this? I'm just trying to help you here." I was floored!!!! Did I really just hear that? I grabbed my purse and headed out the door. Needless to say I WILL NOT be going back for my appointment this afternoon.
Tuesday, November 6, 2007
Arthritis Pain
For the last month I've been enduring LOTS of arthritis pain, and nothing seems to be working. I've been to see my rheumatoligist 2 times and called his office 3 times in the last month. I went in for another Remi.cade treatment (didn't work), I took a Med.rol dose pack (didn't work), I got a cor.tiso.ne shot (didn't work)...in fact it's getting worse! I'm desperate here because we're leaving in 4 days on the best vacation of our lives, and I'm miserable!
So I made an appointment with an accupuncturist today. I'm hoping that with todays visit (and hopefully a couple more before we leave) that the pain can be managed. I just don't want to be miserable on our trip. We need this vacation so badly. We need to go and not have a care in the world. Please God, let this work!!!!!!!
So I made an appointment with an accupuncturist today. I'm hoping that with todays visit (and hopefully a couple more before we leave) that the pain can be managed. I just don't want to be miserable on our trip. We need this vacation so badly. We need to go and not have a care in the world. Please God, let this work!!!!!!!
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