But you don't look sick

That saying is one of the most annoying, frustrating, and emotional statements that can ever be made to someone like me, or as I've learned, from almost anyone who is dealing with a chronic illness. What needs to be understood is that my health can change on a dime.  I can feel fine at 3pm on Friday but by 8pm on Friday, I can be nauseous, sick to my stomach with significant abdominal pain, or in the case of what I'm dealing with now, hands that won't close, and knees that won't stop buckling when I try to walk.
This causes emotional strife for me.  What I mean is, when I'm not feeling well, but two hours previously felt great and committed to something, it is very guilty feeling for me to call that person and let them know that I can no longer attend. While my friends are understanding, and always have been which is why you are my friends, I will always have the guilty feeling which probably doesn't help not feeling well :) It's all a catch 22.
But there are so many people out there who don't have the friends I have who have to deal with responses like, are you sure you don't feel good? Are you sure it isn't all in your head? You don't look sick? How can you have a digestive disorder and be the weight you are ? YADA YADA YADA, and for that, I am grateful for every single one of you.  I can deal with feeling guilty when I don't need to, but I would have a harder time dealing with finding more spectacular friends than the ones I have now !!!!

Things we don't talk about...out loud...

So how many of you have tried Reiki? I tried it for the first time this weekend and while it’s concept is strange and you can’t imagine that you get anything out of it, it was fantastic. The concept surrounds taking your bad energy out and replacing it with good energy and this is done by someone who places their hands on you in certain places such as your elbows and knees for a long period of time. The official definition: a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being.

It was great ! I felt totally relaxed but I also had experiences of waves of energy throughout my body.  I don’t know if it necessary meant that she was transferring positive energy to me, but it felt that way and I felt great afterwards.  So, this further reinforces my needs to try to find alternative ways of dealing with the pain and the emotional anguish that I’m going through. But, then days like last night happened.

As most of you know who take any sort of narcotic, they can ‘bind’ you up.  Big time! And last night for me was that time. Everything I tried didn’t work. I’d feel like oh yes, this is the time, but nope, it was all just a false alarm.  Eventually things worked out for the best, and forgive me for the humor but I know feel light as a feather. It’s one of those things that you have to weigh the pros vs. the cons. The pros being obviously a more pain free way of life, but then this big con rears its’ ugly head. Luckily, as I’ve said before, I have great friends, boyfriend, and family who made it all a big joke, and helped me get to the end goal ! J

Also --- after guidance from a friend, which helped reinforce some more thoughts in my head about what is going on and other means of healing, I’ve made an appointment with a naturopathic dr in the NH area on her recommendation.  While it’s two months away, I know that no matter whether I am suffering from anything physical that is manifesting itself, that I know that this type of medicine, natural, will help me better in the long run. Looking forward to it….

Emotions...

Now, I consider myself a strong independent person.  But one of the things, in addition to dealing with all this medical stuff, is being able to let go of the independence, at least a little bit.  When I call my mom and dad crying at 2am in the morning wanting my mom to come and help me, obviously that is letting go of some independence at a time of great need or emotional strife. But, I need to work on doing this more often. Accepting help when it's offered and realizing that the people who are offering help (hopefully) aren't offering it out of pity but out of love and concern for me and to make sure that I can do what I am looking to do.

So bear with me everyone. I'm getting there :)

Cautiously optimistic

I have now brought you all up to speed to this past week.  I got the results of the colonoscopy.  In one section of one biopsy, there was evidence of low grade dysplasia, aka pre cancerous cells. Just fabulous. My GI told me not to be worried about it, but who doesn’t get freaked out when the word cancer enters their health world.  Worst case, she feels is that I may have to have more colonoscopies more often than the every 3 years I have now. Her next step was to talk to my GI in Boston and have his folks read the results for a second opinion….still waiting for the results as of today.

And then, I get a call from my pulmonologist to schedule a follow up chest xray. Had the chest xray Tuesday, and while it doesn’t show any more pneumonia (WOO HOO!!!), the radiologist saw something ‘hazy’ in it.  He reviewed previous Chest Xrays as well as the previous CT scan and asked my pulmonologist what was being done about the haze, had a follow up test been done. My pulmonologists response, no one told us about the haze, it’s not written in the findings that I received. So, next step, the GI and pulmonologist are going to review all my past Ct tests (had a bunch in Boston) to see if something shows up that would mirror what the ‘haze’ was to rule it out. Again, the word cancer pops up in my head, especially when they tell me the ‘haze’ is near my pancreas and adrenal gland.  Still waiting for the results as of today nervously wringing my hands, and of course hoping for the best, but fearing the worst.

So, as you can see, it’s a wait and see game.  And yes, I still have the joint pain.  But, I can start the Humira tonight and hopefully we will see improvement on the joint pain…albeit not for a few months. Humira works slowly and so I have to wait. 

A lot of waiting…and waiting…

So while I’m waiting for results that may change my life forever (either good or bad), I’m finally getting a handle on my emotional well being. During this long arduous and painful process (we’re going on 5 months !!!) I was constantly crying, constantly seeing my moods go up and down and just feeling like I couldn’t take one more minute.  This past week I’ve started seeing an acupuncturist again, signed up at the local Y so I can go to swimming classes, and found a yoga place that does classes by donation.  The yoga place also does meditation classes, and I feel that this will help give me tools to get outside myself so I can better deal with the pain on a daily basis. I am still working with the same therapist as well. She makes me laugh, cry and feel better all at the same time.  And the holidays are coming up. I know it’ll be a great time with friends and family, and that extra emotional boost hopefully will also help.  I know that I’m weighing heavily on this, and the Humira working to heal my emotional and physical health, but what else do I have??? 

Procedures, procedures...every where procedures

I finished the antibiotics, but the pneumonia was not gone.  I was still winded doing everyday things, and as a general rule, felt a lot of malaise and fatigue. I was still going to work, or working from home on good days, but on bad days, I would sleep 10 -15 hours and still feel like I hadn’t slept more than a few hours.

During all this time, I am still seeing my docs on a rotating basis and we are now into the end of September, early October. I still have the joint pain throughout all this (what you thought it might be gone?) and my quality of life, my social life, my interactions with friends and family were going the way of the dodo bird…..My social life is important to me. While I’m not a big partier, or purveyor of bars, I enjoy and relish the time I spend with my friends and I was unfortunately not able to do this.  My friends knew I was sick and gave me the comfort when they could, but it wasn’t enough. My emotional state was really suffering.  I was crying on a daily basis especially when trying to do a simple task such as grabbing a plate out of the dishwasher, and needing two hands, or a cane to balance just to get it. 

So, early October rolls around and my mom has made one more trip out to support me for a few days.  And I started the fevers again at night.  100 or more.  ON the night I hit 103.7 I decided it was time to go to the emergency room.  I went, and they again, did a chest x-ray and determined that the pneumonia was still pretty prevalent and gave me another dose of antibiotics.  It was an antibiotic I was familiar with and I knew it was strong and was going to kick my ass for a few days, but if it worked, I’d take anything. I started to feel a little better, day by day. 

My next doc appointment was with the pulmonologist a couple weeks later. Another chest x-ray and he said he wanted me to have a thoracentesis to remove the fluid from my lung. He felt that the infection was actually being reinforced by the inflammation my body was experiencing (all my blood test inflammation markers were high during this whole experience) and I needed to get rid of the fluid. Now a thoracentesis involves a large needle going into your back to remove the fluid. Recommendation : DO NOT WATCH YOU TUBE VIDEOS OF THE PROCESS. I made the mistake of doing so, and since I already am anxious, this made it more so. Out came the Xanax and a few of those were popped to control the anxiety for the procedure. I ended up not having the procedure. The radiologist determined that between the chest x-ray I had had with the pulmonologist to that day, the fluid seemed to have minimized, and as a result, he could not guarantee that he wouldn’t puncture my lung to remove the fluid. He did not want to take the chance. 

Two days after the aborted thoracentesis, I had a doc appointment with my PCP. This was my annual physical. She and I had had numerous candid conversations about my pain and how it was affecting me. She had set up an appointment with a therapist, who I had just started to see and I felt would be a good thing for me to stick with. So, during this appointment, we talked about the pain meds I was taking. I was still taking Vicodin but was taking 1 every 4 hours and I felt that it was a bit much. As it’s known, Vicodin is highly addictive and to be honest, I can see how that could happen. So, she prescribed time release OxyContin and recommended I take it every 12 hours and if needed take Tylenol or Vicodin to supplement. While I knew that Oxy was just another opiate with addictive properties, I knew that taking less of them would be better for me emotionally.  Of course, at this time, I’m reading a book by Jennifer Werner about a mother who is addicted to Oxy and Vicodin, so that timing was just perfect to increase my anxiety about the risk of becoming addicted.

Bounce ahead 1 week. It’s colonoscopy time. My mom had come out again, and was going to be there for a couple days to get me through it. I have had 2 previously and was nervous but cautiously so as I had previously experienced and knew the worst part was the prep. I promise, that is the WORST part ! You may think the procedure is the worst, but when you’re out, you don’t know what’s going on, nor do you feel anything….I woke up from the procedure feeling pretty good.  The results of the procedure were relayed to me.  I had significant inflammation as well as lesions in some areas. They did and I felt that it was a bit much. As it’s known, Vicodin is highly addictive and to be honest, I can see how that could happen. So, she prescribed time release OxyContin and recommended I take it every 12 hours and if needed take Tylenol or Vicodin to supplement. While I knew that Oxy was just another opiate with addictive properties, I knew that taking less of them would be better for me emotionally.  Of course, at this time, I’m reading a book by Jennifer Werner about a mother who is addicted to Oxy and Vicodin, so that timing was just perfect to increase my anxiety about the risk of becoming addicted.

Bounce ahead 1 week. It’s colonoscopy time. My mom had come out again, and was going to be there for a couple days to get me through it. I have had 2 previously and was nervous but cautiously so as I had previously experienced and knew the worst part was the prep. I promise, that is the WORST part ! You may think the procedure is the worst, but when you’re out, you don’t know what’s going on, nor do you feel anything….I woke up from the procedure feeling pretty good.  The results of the procedure were relayed to me.  I had significant inflammation as well as lesions in some areas. They did 40 biopsies of tissue and would have those results in a few days.  I went home……

The summer ends....

Now, at this time we in the middle of August. My vacation is way in the past, but my story of pain and suffering are still continuing.  At this point, I was taking other medications in addition to the Vicodin for pain including methotrexate. Methotrexate is a pretty toxic drug that is actually given to cancer patients (at much higher doses than I was taking). You take it once a week, and you take multiple pills. Methotrexate has been known to help with joint pain though so that is why I was taking it. I took three weeks of the drug (the first time I took it, my lip swelled up like I’d been stung by a bee, but no other reaction after that one).  On the third week is the week that I started having some other pain in addition to the joint, and this was on my right side.

It started out as a nagging twinge, but became much worse very quickly.  One of the things my rheumatologist had said about methotrexate as a side effect is toxicity which can cause breathing and lung problems and to notify her immediately if I had any back pain.  When the twinge became more so, it started to radiate around to my back, and so I found myself back at the doctors’ office.  My rheumatologist was not available, but her partner was.  He had me do a CT scan, and confirmed that I had pneumonia.  He started me on a 5 day dose of antibiotics.  In addition to the back and side pain, I was having issues breathing, and became winded doing the simplest things, like having a conversation at work.  Taking a deep breath was nearly impossible and would cause spasms that almost brought me to the floor. 

I finished the 5 day dose of antibiotics, and then the fun really started, sarcasm laced.  I started spiking fevers of 100 or more on a nightly basis, and now, instead of the pain on the right side, it was one the left. I broke down and called my mom. I needed her. Just to be there, to rub my back, and brush my hair, and make cinnamon toast and to tell me it was going to be ok. She came out on a Thursday and got to see me first hand and how I was feeling. She knew I was in pain, as she could see it in my face.  At this point, the pain on the left side was putting me on the floor when I had a spasm, to the point where I couldn’t breathe for about 30 seconds or so. And yes, in addition to all this, I still had the joint pain.

I called the doctor, again.  And she prescribed a 10 day dose of antibiotics and gave me a referral for a pulmonologist. So, now, my arsenal of doctors were my PCP, my rheumatologist, my gastroenterologist, my pulmonologist, and my Boston based gastroenterologist who was getting updates on a periodic basis and was providing advice and suggestions.

I went and saw the pulmonologist, and he made me laugh. He reminded me of Cramer, coming and going with a flip and a flop and kind of all over the place. He asked for a Chest X-ray to be done, and confirmed that the pneumonia had moved to the other side. The right side was cured, but the left was not. He also spoke to my GI and together they determined that I needed to stop the Humira until the pneumonia infection was gone. Now, Humira is a drug that wipes out your immune system. That’s its job. Crohn’s is an autoimmune disease where the body determines that foods in your intestines are a foreign body and it attacks it.  By wiping out your immune system, your body doesn’t react that way but it makes you highly susceptible to infections.  Now, Remicade is in the same boat in terms of how it works, but I didn’t experience too many infections with it in the five years I was on it, except for some occasional sinus infections.

So, now we’ve added an antibiotic to my medicine regimen and removed Humira, for now.  I finished the antibiotics…..

July & August

When I returned to NH, I was still in pain. Great grand overshadowing life pain.  I went to see my PCP and she referred me to a rheumatologist.  I had numerous appointments with the rheumatologist which included what felt like thousands of pints of blood being taken for tests.  I was tested for everything…

SLE – Lupus – Negative

Drug Induced Lupus – Negative

Lyme Disease – Negative

Osteoarthritis – Negative

Rheumatoid Arthritis – Negative

Fibromyalgia – All markers were negative

Everything was negative.  And as the negatives piled up, my emotional stability wound down.  What was going on ? I mean, no one likes to go to the doctor, but that was overshadowed by the fact that no one could figure out why my joints were as bad as they were that they required opiates to deal with the pain. 

My rheumatologist really was, despite the negative test results, adamant that she felt that I had drug induced lupus from the Remicade.  Around that time, I had my next infusion, and the joint pain went away almost instantly.  I did a happy dance (no, literally, I danced!!!), but it didn’t last. And as a result of the Remicade getting rid of the joint pain, the rheumatologist was accepting that it wasn’t drug induced lupus, but the drug itself made me feel better, albeit only for a small amount of time.  About two weeks after the infusion, the pain was back.

During all of this, I had made the decision to get a GI up in Exeter, since going to my GI in Boston was tough to do when I had multiple appointments and when infusions had to be rescheduled. Luckily for me, the GI I chose at Exeter Hospital had done her residency with my GI in Boston so the co-doctoring they were going to be doing wasn’t going to be a big struggle.  So, soon after the pain came back, I went to see her.  She had me take an antibody test right before the previously mentioned infusion to see what the levels were. The results came about a week later, and indicated that prior to my infusion, there were 0 levels of Remicade in my blood.  This indicated to her, that I had built up antibodies to Remicade and that it no longer was working for me. So, we had to do something else. 

Humira. That was the something else. I had to self-inject myself every other Friday.  I was terrified but at the same time, I knew that if it worked, I would be happier and the injections would just become part of my everyday life.  I went to see her again a few weeks later, and we started the injections. The first time you get them, you get 4.  They did 2, I did 1 and then they did the 4^th.  It was hard to do. It’s very hard, mentally to wrap your mind around something that is going to hurt you and you know it’s going to hurt J. Now, as I previously mentioned in a past post, taking Remicade started relief almost instantly (by the next day) and I expected that with the Humira. I expected to wake up the next morning with no pain. Alas, that was not the case.  Two weeks later (still with joint pain) I took my next two shots and I did them at home.  Two weeks later, another shot, but only one.  When you start Humira, you have to uber dose yourself which is what the first six weeks entail and then you do one shot every other Friday. 

And then the next chapter began….

And it starts...

I was excited. It was my annual 2 week trip to Cape Cod this past summer. I had a full two weeks planned with visits from family and friends. I look forward to this trip every year. It helps me recharge, reconnect with my family from far away and enjoy the place that I love more than any other in this world. Lobster rolls, beach time and swimming in the bay are some of my favorite past times, and it was going to be happening in spades.  9 days before I left, I had my Remicade infusion.  That week prior I was feeling a little run down but attributed it to the packing, and hecticness (is that a word?) that surrounds getting ready for the vacation.  I had the infusion, and as always, I felt like a million bucks afterward…able to take on the world and win with energy to spare.

I pulled into the driveway of our rented cottage, and immediately felt the pressure of every day life slough off and go down the drain.  I felt great ! Wonderful and relaxed !

So the days passed by with fun, sun and lots of laughs.  Memories were made, and new places explored. But mostly I enjoyed laying in the sun and spending time with the ones I love.  About 5 days into the trip, my knees started to really bug me.  I mean, bug me.  They were throbbing and by the end of the day was swollen and warm to the touch.  I figured it was all the trooping down to the beach and getting up and down from the low beach chair I had this summer.  Then, my hands and shoulders joined into the pain party.  It wasn’t normal, and I knew it.  I started sleeping more than normal and just feeling really run down. I also attributed this to being on vacation and relaxing from the normal every day grind I had off the Cape.  That first week was spent in the cottage with my family.  My cousin, her husband and her kids.  It was crowded but fun. 

The second week, I moved to another cottage, and my friends started their visits. I had a few sets of friends coming so they were staying a few days and then another couple would come in.  This cottage, had two stories, and unfortunately all the sleeping spots were upstairs while the one bathroom was downstairs. This is when it really started to affect my life. I could barely walk, and getting up from a chair was nearly impossible. My friends were understanding, and knew that I was in pain.  They helped me on the stairs, helped me get up from the chairs and generally were there for me when I needed it. I was taking Tylenol like candy but it wasn’t doing anything. Unfortunately having Crohn’s increases your changes of bleeding if you take ibuprofen or Naproxen so I stay away from that.  I called my doctor.  She called in a prescription for Vicodin and told me to take them as needed for pain.  By the end of the vacation, I was taking 2 at a time to just barely have the edge taken off.  And the vacation ended up being the worst of my recent travels. The pain overshadowed everything. It overshadowed my time with my boyfriend, time with my friends, and being able to go anywhere. Going anywhere was a production of extra time and ensuring that I had my pills on me so that after 4 hours, on the dot, I could take another one, or two. 

And then, I returned to NH and my mass exodus of doctor visits began….

For starters.....

For starters.....what a great way to start my blog which really is a place for me to share my feelings and share my story as its unfolding.  

For starters....I was diagnosed in January 2002 with Crohn's Disease.  I had gone to my PCP for my regular annual physical and mentioned that I was having random abdominal pains.  They weren't serious or constant, but I knew it wasn't normal. So I got signed up for a colonoscopy. What a joy !!!! I entered the colonoscopy with a lot of trepidation and rightly so because they did not sedate me for the procedure. I was awake, felt everything and unfortunately, saw everything.  I spent some time in the recovery room and during that time, my GI came into tell me that he was pretty sure that I had Crohn's Disease.  For some reason, I felt relief at that time. Relief that it was diagnosed and relief that there was a name for it.  Of course at that time, I also didn't think it would ever get worse than it was with the random abdominal pains.  It became something that sort of defined me but at the same time, wasn't real in my head and was only something I related to by reading other people’s stories.

So for the next few years, I played a game of darts with drugs. Some worked, some didn't but there was no bullseye be all end all. Some made me sick as a dog, some didn't.  After a few years of this, I decided that I wanted a more specialized doctor who knew more about the disease and wasn't just a general practitioner of GI medicine. I found the Crohns and Colitis center at MGH.  What a godsend! I felt more taken care of, more paid attention to and just felt overall in better shape about my care. It also helped that my doctor was Dr. Korzenik. He is the best doctor I have ever encountered in my medical career. Always willing to chat away during the appointments with no stressful times of him looking at his watch and feeling rushed.  He took the time to get to know me as a person and what I did and didn't want as it related to my care, and he listened.  Around this time, I developed a fistula. For those of you who are out there with Crohns, you know what I mean. It's a connection between two otherwise unrelated organs.  So, Dr. Korzenik knew that by getting the fistula, the medication I was on was not working and that I was technically in a flare. Again, I was lucky. The only symptoms I had was the fistula, and random abdominal pains. I didn't have any of the other symptoms that you can get.  Dr. Korzenik’s recommendation was Remicade. Remicade is an IV drug that takes about 2- 3 hours to be infused and is quite a process.  But, it healed the fistula so I didn’t have to have surgery and gave me 5 years of remission while only going once every 7 weeks ! And then things changed…..