5 months, 4 days

Five months ago today I was back at my hotel after a four day stay in the hospital. I had a back brace, a walker, and drove Brad and my mom crazy in trying to get a hotel room chair fitted just right so I could sit in it comfortably (it took six pillows). I had over 50 staples in me (front and back), and was just starting to eat food again.

I can't complain. No more back brace, no walker. The incisions have healed nicely. I still have trouble getting comfortable, but I only need two pillows these days instead of six. The best part is that I can do it on my own. Again, I can't complain.

As this is a journal for me to track my progress and to refer to as I visit future doctors - and there will be more visits - I will state that I am still in pain. A lot of pain, mostly in my legs from my hips to my toes. I'm having difficulty walking, and tend to shuffle and limp about. Sleeping is getting more difficult again, and the numbness in my hands and arms is returning. But you know what? Life goes on. I'm keeping busy with work and trying to do as much normal stuff as possible. I know it's not "normal" for most people, but it's the closest I can be to it right now for me. I'm forced to wait on more physician visits, more tests, more results. Until then my plan is to just keep going along. I may struggle to walk across a room, and I may not be able to do a lot normal activities that others can, but I'm here. I don't think I have a life threatening disease, so who am I to complain? It certainly doesn't do any good to do so, so why bother?

So today I choose to look at the progress I have made. Many have had similar surgeries and were still home bound at this point. I was working from my hospital bed right after my surgery. I was back at work part time in a month, and drove to Baltimore - a 6-1/2 hour trip - in less than two months after the surgery. The bone has grown in where it needs to, I have good mobility in my spine, and now that I don't have physical therapy messing me up my back is feeling great. And most importantly, I survived a surgery that was considered unbelievably high-risk; honestly, very few of you know the dangers that were involved and how often I was told that I could easily die on the table or in the days following. Fusions are not as dangerous, but taking that artificial disc out was. I feel indescribably lucky to be here.

So, all in all, not a bad five months. I think it's better to look at progress in the long term vs. short term. It's harder to see progress week by week. Today I needed to take a look at the bigger picture - my "five month" picture. And while it's nowhere near perfect, it's not bad either.

May 7 Appt

I'm writing this half awake, but will try to be short and coherent. I went to Baltimore yesterday, ended up driving. It just didn't make sense to spend so much money to fly there and rent a car, and I do usually enjoy driving if the pain is manageable. The appointment was at 2pm, so I didn't have to leave early to get there on time.

The surgeon was late seeing me - almost two hours late, which I'm used to here in Cleveland but not with him. Busy day. We only spent about 10 minutes together, but we went through the newest x-rays and in terms of L5/S1, everything is perfect. Bone has grown in perfectly, the alignment is perfect and the other discs above it are all still aligned (which can be a concern with fusion, I guess). The surgeon agreed with me to stop attending physical therapy and to just do my own routine, which I was happy with. I know what I can and cannot do, and we have a health center about 10 minutes from here that we've belonged to in the past that I'll just start using again. He stated that based on the condition he found all of the old hardware in my back, it had appeared to be pressing on several nerves and said it would take time for those nerves to heal. We discussed my most recent blood results and he agreed that a rhuematologist was a logical path to follow. If I can't find a good one here, then he offered to hook me up with one there. Obviously a Cleveland doctor would be more convenient, and I just happened to receive an email from a friend of mine today about a good guy to see (thank you, Donna!).

In regards to how I am doing compared to others in my position, I guess I am ahead of the pack. The surgeon thought I was doing amazing for a 6-month followup, but when I reminded him it wasn't quite 5-months yet he said "even more amazing." He asked if I had returned to work, and reminded him that I had returned back in January, which once again he was impressed with, along with the fact that I drove there and back. He gave me a rating of a "5 out of 5" and said he'd like to see me in December to see where I'm at a year after the surgery. Was told I should still expect pain from the nerve damage and from the other mysterious symptoms I'm experiencing, so I should continue to take medications as needed.

I stayed at the hospital for about 30 minutes after the appointment to get online and do a few work things that I couldn't do from my phone, then got back in the car and headed home. I was going to try a new route through Pennsylvania since I-76 was just all construction (with little activity, at least driving to Maryland; there was more activity in the evening), but in Harrisburg I missed my chance and ended up going the same way home. With the hills and mountains it's a tough state to drive through, as there are very few roads that head northwest/southeast (most head northeast/southwest), and very few main roads in general. Construction and all of the cops they have on the road make it a tough state to navigate through, and I'm surprised I didn't get a ticket for something along the way. There are so many places where they have the speed limit down to 40 mph for no reason - I think - other than to make it a speed trap. I got to spend about three hours on the phone with a friend of mine I hadn't spoken to in a long time which certainly helped the trip (thank you Moe!), but arrived home at 11:45pm very sore and very awake. I think I finally fell asleep around 3am, then woke up around 10:30 as I had a few things for work to do at home before noon. I don' know why I'm so tired, but I am. I have a feeling I'll be taking an afternoon nap.

So I survived the trip ok. I need to get ready for the day and head over to my primary care office to pick up an order for blood work #2; they are going to test the platelet count again. I'm a bit worried it will be lower (don't ask me why, it's not like my brain can tell), but there's nothing I can do about it this weekend. Brad starts a one-week intensive class tomorrow that lasts a week, so I'll hardly see him this upcoming week. After this class he'll only have one more left before he's done with his MBA, so we're both happy about that. Our summer is pretty free, and hopefully I can get some sort of diagnosis/treatment that will allow me to do some traveling and enjoy life.

Thank you all out there for the well wishes. I hope you all are having a great week, and have a great Mother's Day weekend to all you mom's out there. To my mom and Grandma Grimm, I want to give a special shout-out, as I would not be who I am without these two great ladies. I really lucked out in the family department.

Results - Part 2

I received the rest of my test results on Friday. Thyroid and antibodies were normal, but my anti-nuclear antibody (ANA) count was still just as high in one test but lower in a second test. (They look at the count two ways). I am going to be referred to a rheumatologist (this time not a Cleveland Clinic one), and will have my platelet count tested again at the end of this week. I'm hoping it's above 19,000 and not lower.

My weekend was hell. I'm still on some paid meds, and had been working so much I didn't realize how close I was to running out of my key one. I placed the call Friday morning, but the only doctor who would normally handle the prescriptions was out getting married, so no prescription refill for me. Knowing I had to conserve what I had, I was basically med-free all weekend and it was a huge wake-up call. I am far from being cured.

On several occasions I debated in my head whether to head to an ER, but was in such a messed up state that I couldn't think straight and ended up staying at home all weekend, going from chair to couch to bed, with pillows and various positions, trying to get the pain in my legs and back to settle down with no success. I saved what little medication I had for the evening time so I could get a little sleep, which helped only a little on Friday and Saturday but luckily on Sunday evening I was finally able to rest successfully, only waking up a few times. I'm sure I drove Brad crazy, as I was literally unable to sit or lie still most of the weekend, desperately trying to get the pain to get to a level that I could tolerate. I was a useless wreck of a person, going crazy in my own mind as to why I was going through this torture.

One reason for my situation is physical therapy. I had no back pain when I started my sessions, but I do now. I find that further I get from my last appointment, the better I feel. Today is Monday, it's been five days since my last appointment and my back is finally not killing me like it was all weekend. It was like that last week as well; I had four days of torture (but I had medications to help), then on day four things settled down, I went to physical therapy and by that evening I was miserable again. So no more physical therapy for me, not unless someone can give me a good reason why.

As for everything else, I have no explanation. I saw the last 15 minutes of a show called Mystery Diagnosis on Saturday evening. Had never seen the show, but while Brad was upstairs decided to tune in. Ironically it was about a 40-some year old woman with similar symptoms and almost identical ANA results. It took her nine months for a diagnosis, but in the end she had an auto-immune disease called Scleroderma. She was undiagnosed the first time she saw a rheumatologist because she showed no outward physical signs of an auto-immune illness. I found myself in tears...the story hit too close to home. I felt horrible for her. In some ways I was jealous it only took her nine months of questioning and tests. In other ways I feared a similar fate, a diagnosis with no treatment options. I doubt I have what she has, but each day that goes by makes it more likely that the nickel wasn't the cause of my ills after all. The surgery took away the back pain (as long as I keep the physical therapy people away from me), but I'm still not right. My blood work proves that.

So while this weekend was a waste of time, this week I must get back to being productive at work and prepare for the long drive and back (all in one day) to/from Baltimore to see the spine surgeon for a follow-up. I'm hoping there might be someone he can recommend there, as I have little faith in the doctors in this town. I guess we'll see. At least they refilled my medication this afternoon, so I will actually be able to have a good night's sleep. I hate taking medications, but it's obvious that right now that is the only way I can be a semi-productive individual in society.